Posted Dec 6, 2006 2:20pm
At the hospital in labor. I'm about to get an epidural. The girls are at daycare and will be coming up after 5:30 when daycare closes. I'll keep you posted.
Posted Dec 6, 2006 6:07am
Nothing. Still no room. Mason woke up early - it's like she knew that I'd have nothing better to do this morning so...why not?!
Posted Dec 5, 2006 7:33pm
Mason had therapy at TCH today and did pretty well. She's still really congested and snotty so she wasn't in the best of moods but she persevered through it. She also keeps chewing on her thumb so I'm thinking there's another tooth trying to break through. Her 4th first year molar finally broke through all the way and is now just getting a little taller. She had a weight check and was 17 pounds 8 ounces and 28.8 inches long. Basically she's lost about 6 ounces since her last official weight check on October 3rd...but gained .3 inches in height. I'm going to blame this on her new found ability to "walk" while holding on to things...
I have to call in tomorrow morning at 6am again to see if they have room for me so I'll post again then. Hopefully there will be some room at the inn. ;o)
Posted Dec 4, 2006 7:02pm
I've been rescheduled for Wednesday. I have to call in at 6am and hopefully, this time, they'll tell me to come on in. I was able to get a lot done at work today though, which was nice. I also wore workout clothes to work thinking I wouldn't be there long and ended up being there all day...made for a really comfortable day.
It was parent's night at gymnastics tonight so I participated as much as I could -maybe that'll bring on labor. I really didn't do much (for all you worriers out there)but I did do the warm up exercises and help Ashton with some stuff. Mason even tried to crawl out on the mats to participate but she's still too little.
Mason seems to be battling the same sinus infection again..she's just really congested, kinda cranky, and has that nasty wet cough. She's in a good mood most of the time but that occasional "kinda cranky" moment is so uncharacteristic of her. She's in the living room now enjoying the beauty of our Christmas tree - she's amazed by it. I'll post again after therapy tomorrow or if Mother Nature gets labor going.
Posted Dec 4, 2006 12:32pm
Okay, so all morning they tried to get me in but...no room. Apparently all of Greater Houston is in labor today. They are calling my doctor's office to reschedule and will call me back with a date. The joke all day has been that there's no room at the inn...fitting for a December birth.
Now I have more time to spend with the girls and hopefully I can take Mason to therapy tomorrow at TCH. I have a feeling Mother Nature will take care of things before the hospital has a chance to.
Posted Dec 4, 2006 6:19am
So I just called the hospital to check on my induction and they don't have any room at the moment. I have to call back at 8:30am. I am going to go on and take the girls to daycare and go into work until I get the all clear to come to the hospital.
The girls and I had a great weekend together. We went to Angleton's Christmas on the Square with my mom and had their picture taken with Santa - Mason cried and tried to get away from the man in the red suit and Ashton just laughed...it's a funny picture. My friend Mari and her family were right behind us - her little girl was wailing too and her 3 boys were grinning from ear to ear.
Mason is wanting to walk all the time. She "stiff-legged" my mom yesterday...mom went to set her down on the floor and was expecting her to just sit like usual and Mason threw those legs out, locked her knees, and stood up. Mom then had to walk around the room with her - it's pretty funny how Mason can control a situation just by how she places her legs.
I've got to get ready for work. I'll post again if I get the all clear to go to the hospital.
Posted Nov 30, 2006 9:19pm
Busy week. Mason did really well in PT this week. She walked and climbed on stuff but was a bit cranky. On Wednesday, when I took her to school, she threw up - which explained the crankiness the day before. She's had a sinus infection and I think the drainage was making her sick to her stomach. She's all well now and has to go get a RSV shot tomorrow (Daddy gets to take her to that appt).
Tomorrow is my last day at work for a while. I'm being induced on Monday unless the hospital fills up with women in natural labor. The baby is due on the 9th but my doctor said we could go on and schedule it for Monday. I have to call in at 6am to make sure they have room for me. This little guy will be born at Woman's Hospital of Texas just like Mason was. Hopefully it'll be an easy delivery like his sisters! I've been working late trying to get everything lined out for when I'm out.
On a side note, my husband's grandmother passed away Monday this week and we had her funeral today. She lived to be 85 and died of complications from Alzheimer's Disease. Please pray for Corey and the Taylor family - they're missing her a lot right now.
Posted Nov 25, 2006 11:34pm
I am so sorry for not posting this month...it's just been busy at work (trying to get stuff done before baby) and I'm exhausted. Mason is doing well. She currently has a bit of a sinus infection and is wheezing slightly (having to do breathing treatments)...but she is in GREAT spirits! She's cruising all over the place, holding on to whatever piece of furniture or person she can find. She wants to walk so bad. When you go to set her down she tends to lock her legs so that you're forced to "walk" her around the room. It's absolutely wonderful to watch her - she's still so tiny it just looks like a 7-8 month old trying to walk! I took her to the dr. the day before Thanksgiving and, with her clothes on and a wet diaper, she weighed 17 pounds 11 ounces...the nurse was even acting disappointed. We were all so sure she had gained weight and it just wasn't the case. This morning she and Ashton were playing on the floor and for one of the first times, she looked her age to me. The way I had her hair fixed and the way she was sitting and playing, she just looked like a soon-to-be 2 year old.
She's been doing wonderful at the ACC Lab School and her classmates and teachers just love her. I think if it wasn't for her size, she wouldn't seem all that different from the typical kids. However, with her tiny size, the kids even refer to her as a baby sometimes...but they don't treat her like one! She got attacked one day when a "friend" tried to take a cookie right out of her mouth - but she fought back! She is holding her own straw cup to drink now and rarely tries to fling her plate off the table anymore. The school is now only putting a little piece of tape on the bottom of the plate instead of all the way around it. At home we're seeing carry-over too...she isn't trying to throw her plate as often with us either. I was told that on Monday or Tuesday of this week, at school, she tried to drink from an open cup all by herself and did farely well. They had to change her pants because she spilled some but she was able to do some it pretty well. It's just so exciting to see how many skills she's gained from being at the lab school and being around an entire classroom of typical kiddos! Don't get me wrong, she's picking up some bad habits too (has been hitting but has stopped that after some time outs at home), but the good outweigh the bad.
All else is well in the family. My pregnancy is trucking along - 2 weeks left roughly. I fully expected the baby to come this week but it doesn't look like that's going to happen...unless Sunday is the day. I kept joking that he'd come just before Thanksgiving dinner and I'd get cheated out of my seafood but no luck. We went to Landry's instead of cooking this year - and it was WONDERFUL!! I'm not big on turkey and I can't stand stuffing so eating shrimp, fish, and etouffe was so much better and it was an all you can eat buffet -yum! Mom and I went out with the crazy crowd and shopped yesterday - started at 5am and bought some needed items cheap. I've never done the whole day after sale thing but it was kind of fun. I even made it home before Corey and the girls woke up. Ashton is being very helpful and is getting so excited about the arrival of her baby brother. Corey is excited too. I know he can't wait to have another male in the house!
I hope you all had a great Thanksgiving! I would like to thank you all for your prayers and well wishes.
Posted Oct 30, 2006 10:36am
The weekend went wonderfully. Corey loved San Antonio and was able to soak in a lot of Texas history. The girls did great and seemed to enjoy themselves most on the boat tour of the Riverwalk Saturday night. Mason mastered a new skill in the hotel room. She can now stand at a table, bend over to pick up an object (without falling down), and then place that object back on the table. She's been doing this for awhile but she usually falls down so...this is progress. I posted the girl's caricatures that we had done and will post pics once I get them off of Corey's laptop.
Posted Oct 28, 2006 12:11am
So the week is over and we now find ourselves in San Antonio for short but much needed mini-break with the girls and anniversary celebration. Ashton returned to school on Wednesday and has been fever free since Tuesday night. Mason is her usual cheerful self. She's quickly becoming the class favorite I think among the other kids in the toddler room - probably b/c she's so tiny and, to them, baby-like. She's eating well at school as long as the plate is taped down. Both girls' classes had visits by local firemen on Thursday- Ashton is still talking about it! She was very impressed with them.
Today was the lab school's Pumpkin Patch Party...they have children's carnival games and prizes - ring toss, bean bag toss, fishing for prizes, craft activities...they had a lot of fun.
Mason did well in her therapies this week - walked both therapy rooms at TCH on Tuesday and then was working on turning from the coffee table, take a step, and get to the couch with ECI therapy on Wednesday.
On the drive to San Antonio tonight we worked on shaking hands instead of kissing everyone and high 5s...I'm just not a fan of the high 5. It seems to me, and some other friends and family, to be the universal greeting that "typical" people expect from DS kids and I'm just not up to perpetuating that. It's a pet peeve and I need to work on it but...
We hope to have a nice Dia de la Muerta (Day of the Dead - it's not as awful as it sounds - it's a day to honor deceased relatives in the Mexican culture) celebration here in San Antonio and to enjoy our anniversary too. This is Corey's first time to San Antonio so we have a lot to do tomorrow and Sunday. Thanks for the continued prayers and support - Mason's improving daily!!
Posted Oct 22, 2006 1:16pm
The fair is over...Ashton was upset and Mason is indifferent. We went up most of yesterday. Mason watched some of the Chicken Scramble before she fell asleep (it was really hot during the day). Ashton did really well - they were full grown chickens this year - no nets to catch them with, the kids had to use their bare hands! Ashton had 2 chickens that were handed to her by volunteers because she was being timid. After that, she tackled the biggest chicken in the pen and caught it herself! It was hilarious! We went back last night, once it had cooled off some, to ride rides and just enjoy the last night...it was nice and Mason LOVED to watch her sister on the rollercoaster and on the "Big slide." The slide was about 3 stories high and Ashton had to sit on a potato sack to ride down.
There was a booth that made custom car stickers/decals and I had one made for my van...I'm very proud of it. It's pink and has a picture of a little girl in a cape in the middle with words around it saying "My kid has more chromosomes than yours!" It's wonderful! I hope it prompts many questions from people so I can show them how wonderful my Mason is. The supergirl is significant b/c I'm always saying she's genetically enhanced or a superbeing/superhero of sorts.
Ashton is ill today - I think she's having a bit of a semi-flu reaction from her shot but hopefully she'll be all better tomorrow for school and gymnastics. I guess now I'm going to have to get another sticker for my car that refers to her in some way so she's not jealous (maybe a little gymnast - I think they sell them at All American where she has class).
Posted Oct 20, 2006 7:14pm
It's FRIDAY!! Mason had a busy week this week. She had physical therapy at TCH on Tuesday and did really good - she walked around the therapy room with her walker, climbed some stairs, and did some kneeling. She had ECI come out to the house Wednesday for more physical therapy. OT with ECI was originally scheduled to come to the school this week but is coming next week instead.
We've taken her out to the Brazoria County Fair many times this week and she seems to really enjoy it - especially the food. Her favorite fair foods seem to be boudin, funnel cakes, and fried oreos. All bad for her but they're eaten in moderation so...
She really enjoys the animal pens - especially the pigs and sheep - which happen to be the smelliest. Tomorrow is the Chicken Scramble. Mason's too little to participate in it but Ashton's going to do it - I'm sure Mason will love to watch her. The kids run around in a pen with butterfly nets and try to catch baby chicks...it's hilarious to watch.
Mason and Ashton got their flu shots Thursday. We took Mason to see her pediatrician b/c she has some blisters on the corners of her mouth and the office had just received their flu shots so...we went on and had both girls immunized. Not a happy moment overall but a quick trip to Chick Fil'A seemed to calm them down.
Mason really seems to be back to her pre-hospital status regarding leg function. She's doing great at the lab school and is eating well at school too - though they have to tape her plate down so she won't throw it.
Posted Oct 15, 2006 2:56pm
Everything is trucking along. Ashton did the Brazoria County Fair Parade as Little Miss Pony Land - she did WONDERFUL...she waved, smiled and did her thing. Mason really enjoyed seeing Ashton on that horse...when we passed Mason and the rest of our family she was just waving and waving. I figure in a couple of years, Mason will be on the back of that horse in the parade. Mason went to the fair last night with us and watched the rodeo (she really liked the horses). She didn't ride any rides last night but we're going back this week so she can ride.
We had to skip PT this week due to BAD weather in Houston but have worked a lot at home. She's standing up a lot and starting to try to cruise around even more...she even tried to use her walker on her own this morning but couldn't get turned the right direction. She's cutting another tooth and hasn't slept well the past few nights - for some reason this tooth is bothering her more than any of the others, even more than her molars.
Posted Oct 9, 2006 8:45pm
Mason's first day back at ACC Lab School went great! She was a bit of a toot at lunch...threw the food she didn't like on the floor but ate what she liked. It's so difficult getting her to leave her plate alone too - she keeps flinging it at home and at school. I've bought the suction cup bottom plates and they don't work. It's just a matter of teaching her table manners. She lacks basic social graces like most toddlers. She did pick up her straw cup, take a drink, set it down appropriately, and then proceeded to throw it on the floor. I know she can do it right but getting her to stop flinging is going to be HARD!!! For those of you who didn't know...this whole holding of the cup and drinking independently thing is a VERY new skill so it's exciting for us.
When I got to the school today to pick Mason up she was eating her afternoon snack at the table. Mrs. Adriana, the lead teacher, took her over to the itty-bitty sink and made her stand up and wash her hands when she was done! She couldn't reach the stream of water b/c she's so short (even for the itty-bitty sink) but she had her lather her hands up, helped her rinse them, and then dried them. I just love what they are trying to teach her. I do plan on buying the school a step stool for the sink so it'll be a bit easier for her to reach the water though.
Ashton skipped school today due to sinus issues but is going in the morning. Everything is back to normal officially!!
The OT from BACH is going to the school next Tuesday to answer any questions the staff may have and to offer suggestions if she sees something that needs to be approached differently. I really don't expect her to find much to pick on them about. The teachers are so patient and wonderful with Mason! We're just so blessed to have her in that school. They use sign language with her and don't seem upset or frustrated by her flinging or general delays.
Posted Oct 7, 2006 10:51am
Sorry for not posting this week but our home computer has been down - actually it is officially dead - smoking and sparking. Anyway, Mason is doing extremely well. She's pulling up on everything and beginning to utilize her left leg occasionally. Her PT session this week was depressing at first b/c she had lost so much strength in that leg but...by the end of it I was encouraged by the fact that she still remembered that she had to move both legs to walk. She moved her legs reciprocally to walk but needed support to maintain standing - that lack of strength and stamina is the big thing. Her weight is okay, nothing great...she's 17 pounds 14.8 ounces and was 28 inches long...she's gained length!
We also went to the grand opening of the Down Syndrome Clinic of Houston at Texas Children's Hospital on Tuesday night and saw a lot of our DS friends. They have committed office spaces to the DS Clinic and have a full time nurse just for our kids. Dr. Neru Madduri is heading up the clinic and it will have a multidisciplinary approach to assessment with specialists and therapists doing a team evaluation of our kids...finally!
Thanks for the support. Mason goes back to "school" (daycare) at Alvin Community College on Monday! I can't wait and I know she's ready to be with other kids and be back in the room.
Posted Sep 29, 2006 8:54pm
Just a quick note to let you know that Mason's doing well. All signs of strep/sinus are gone. She's still favoring her left leg but is (as of Thursday night) trying to stand up a bit more. She's only putting her toes down and won't fully put weight on it but, she is standing! She will have her first PT session in over a month on next Tuesday - I'm very curious to see how she does. I noticed the other day that she's very aware of her left leg when she tries to sit down. If she's standing, instead of just plopping back on her butt, she will lift and bend her left leg in to her chest and THEN sit down. Apparently, she knows what she can tolerate and that "bust your bootie" sitting wasn't feeling too good on her leg. There are no plans for MRI, CT, x-ray or any other imaging studies until Dec/Jan but we will follow up with therapists and doctors regularly in between.
FYI- The evening of October 3rd is the grand opening celebration of the TCH Down Syndrome Clinic of Houston. It's from 6-8pm at the Meyer Center in the Clinical Care Center of TCH.
Posted Sep 27, 2006 9:02pm
So Mason seems to be on the mend now!! Thank God! She's been fever free, loves her new antibiotic (Omnicef tastes like sweet strawberries), and just a minute ago she pulled to a stand on the ottoman. Her leg was out-turned but she did it. Everyone even slept thru the night last night!!
We've decided to do the parade and let Ashton ride a pony in it...we're skipping Buddy Walk this year. I'm throwing my feelings of guilt out the door and not looking back. Ashton has earned this. My mom and I even went tonight with the girls to the western wear store and bought Ash some red and black boots to wear. She won't take them off now!
Thanks for all the support.
Posted Sep 25, 2006 9:31pm
Well, Mason is definitely ill. She's been up at night, every night, since Friday with fever. Even with the antibiotics and Tylenol/Motrin from Saturday's dr. visit...she still has fever. Corey's pulled the 2am-6am shift and I try to take over around 5-6am. She's only wanting to sleep upright; either leaning against my belly or on daddy's shoulder, or occasionally propped up on a pillow. Last night Corey tried to sleep on the couch holding her on his shoulder...needless to say, he didn't get much sleep and then had to work all day today. Poor daddy. When I got her at 6am she was exhausted from not sleeping and finally passed out sitting up and leaning against me. It's just so strange how her fever doesn't seem to go away. Her nose is also pretty nasty and she's really upset at the moment. I guess it's time for the Tylenol.
Her pediatrician called me this evening to see how she was doing and how we were holding up. I told her about the fever not going away, even with Motrin and Tylenol. She felt that the antibiotic wasn't strong enough and called in a prescription for Omnicef. She said Mason probably has a sinus infection along with the strep and this other antibiotic should knock it out. She asked about her leg; told her that Mason still won't apply pressure or try to stand like she had. Dr. Isenhower asked that we call her if the fever is still present on Thursday or if Mason doesn't start to try to stand by the end of the week.
Ashton had gymnastics photos tonight and looked gorgeous. We won't get our pics for about 4 weeks but I'll post it when it comes in...she did a great job and smiled beautifully!! She's also been asked to be Little Miss Pony Land in the Brazoria County Fair Parade. If she agrees to do it then she'll get to ride her favorite horse Buster in the parade. However, it's at the exact same time as the Down Syndrome Association Buddy Walk. I don't want to negate Ashton's activity for her sister's but I don't want to skip Buddy Walk if Ashton is going to back out the day of the parade. It's a tough call. I wish I could clone myself and be two places at once but...gotta make a decision and pick one over the other this time. I'm leaning toward the parade since Ashton has been so good and understanding this month with Mason. This Little Miss is a one time offer and Buddy Walk is every year so...what to do, what to do?!
Posted Sep 23, 2006 7:20pm
Okay, so x-ray results show no break but there is still lots of swelling from the biopsy and bone trauma from the biopsy (of course). Blood work showed elevations in her Sed Rate and signs of infection but I'm not sure of the exact numbers. However, we did get to see the signs of it at the crack of dawn. Mason woke up at 2am this morning very cranky and Corey got her back to sleep. At 3am she was running a high fever and couldn't be calmed for close to an hour; she had a mild fever of 101. She fell asleep on her daddy's tummy eventually - apparently my belly bump isn't very comfortable.
This morning she was very shakey and poorly balanced, congested, throwing up, and still burning up with fever, even with Tylenol, so I called the nurse. She said to bring her to the office (they're open until noon on Saturdays). The on-call doc, Dr. Garborino, did a strep test and said that it was positive but questioned it a bit (apparently her throat didn't look too bad) and just diagnosed her with pharyngitis. She went on and put her on a 10 day dose of antibiotics and said to keep an eye on her. She noted that my lucky little girl probably picked it up at one of her office visits Friday or from the hospital in general...gotta love it when your "trying to get healthy" kid picks up something from the medical facility.
Anyway, just one more crinkle in Mason's month but it's nothing we can't handle. I was joking with my mom that the dr's are going to think I thrive on having a sick child but man...I'm tired of all this and am just ready to get her back to her friends at daycare and for me to get back to work.
Right now she's resting on my mom and drinking lots of water. She's not too hungry today so we're just keeping her hydrated and cool. Even sick and lying down she managed to do a dance and wiggle to Jack's Big Music Show when I put it on the TV...man does that girl have rhythm!
Posted Sep 22, 2006 4:12pm
So right after my last post, our pediatrician called me back. She disagreed with the Ortho's delay of x-rays and went on and faxed orders to TCH for x-rays and blood work. She wanted to re-check the infection panels and just reassure me. So, we x-rayed the leg and drew blood. No results yet but she's going to call me tonight once she gets them. She said she's pretty sure everything is okay but...if I felt uneasy and was scared about a break then better to check now then wait, especially if Mason's not bearing weight on that again like she was earlier this week. I appreciate her realizing that I'm paranoid!
We're going to the Astros game tonight - I plan on sleeping thru it :o) to catch up on lost time...
Just noticed the time is messed up on the posting - at least on my view of the Care Page it is...it is currently 4:12pm on Friday the 22nd, previous post was at 11am-ish
Posted Sep 22, 2006 11:07am
Okay, so we came back to TCH today to see the Chief of Ortho, Dr. Phillips, and when we got here, Dr. Weinberg came in. He said Phillips had passed Mason's case to him and that he (Weinberg) would see her today...glad to know I wasted a trip Monday for the same doctor to see her today...anyway.
He removed her stitches (no heart shaped scare like I had hoped). Her scare will just be a nice, ugly line on her shin (railroad track looking). I mentioned that I thought she might have broken the leg with a funky little manuever she did night before last and that she had been favoring it much more since that incident. He opted to not do x-rays at this time b/c she didn't cry when she stood up and attempted to put pressure on it or when he touched it. Probably a good call to avoid the radiation but, I'm still nervous that she might've hurt it. He said that we need to keep her out of group daycare for at least one more week so that the wound can heal and won't open up. I even have a little dr. note releasing her back to daycare on October 2nd. I'm going to call Dr. Isenhower now and tell her how the appointment went. Really, he said even if it is a tumor there's nothing they can do about it now b/c her bones are SO tiny. He said that we'll follow up with him in a year, barring any broken bones or future failure to apply pressure. Dr. Isenhower, pediatrician, will probably want to order diagnostic tests (MRI/x-ray) before that...she had mentioned 2-3 months, at the most, to me earlier this week. Anyway, life will go on as it has been. I plan on working when I can next week and then the next week is Alvin ISD's fall break so I will be off that week. It's a rough life but someone has to do it :o)
Dr. Weinberg did say that Mason is now free to move at will but still needs to be careful.
Posted Sep 18, 2006 9:26pm
Okay, so we went to see the surgeon this morning for a follow up appt. He said that he REALLY wanted Mason to see the Chief of Orthopedics, Dr. Phillips, since he'd been on the case from the beginning. He did look at her leg and I showed him how she'd worked "joints" into the splint at the knee and ankle (it bends in those spots) and how she has a BAD, nasty pressure blister on her heal and top of her foot from the splint. He stated that the splint was useless with those "joints" and stated that she could just go without it to give the blister time to heal...though she still is not allowed to put any weight on that leg. I'm guessing this guy doesn't have an 18 month old of his own - how am I supposed to keep her immobile without using a straight jacket or tranquilizer darts?! I say all of this as she crawls around the desk to see what I'm doing and tries to pull up to a stand on a box...it's exhausting trying to keep her down. I even asked about casting it today just to provide some support until we get in to see Dr. Phillips (appt is this Friday at 10am). He didn't want to cast her without Dr. Phillips' input so Friday we'll get some answers and hopefully a cast or AFO for that leg. At this point, Mason has still not been released to go back to daycare b/c of the fragile nature of her leg. I worked a 1/2 day today and plan to do the same tomorrow. Hopefully I can work all day Wed/Thurs too which should help with saving my vacation/sick days that are left...if any.
FYI - she weighed 18 pounds 2.8 ounces with an empty stomach and her splint and clothes on today! I'm guessing her true weight is right at 18 pounds. She looks chunkier than before but is still pretty tiny.
Posted Sep 16, 2006 6:20pm
I spoke with Dr. Isenhower, our pediatrician, this afternoon. She had received the pathology draft report and said that Mason's case was being referred to another pathololgist, Dr. Hicks, who has researched, and published, in the area of benign bone tumors. He is reviewing it this weekend. The potential diagnosis is Osteofibrous Dysplasia. It's extremely rare, so the information that is available is minimal compared to other types of tumors. It seems that the recommended treatment for a small child is observation/monitoring the tumor and operating when the skeleton is mature, unless aggressive growth is noted prior. I have attached links to some sites if you'd like more information. Like I said, this is still a preliminary diagnosis. The report did not rule out the possibility that this could be something else or even a reaction to some sort of bone trauma. So, there's an answer, sort of...hopefully this other doctor and the Orthopedic Surgeons can come to an agreement on diagnosis and tell me something at Monday's appointment.
http://www.emedicine.com/orthoped/topic529.htm
http://bonetumor.org/tumors/pages/page53.html
http://www.ejbjs.org/cgi/content/abstract/63/3/367
Posted Sep 15, 2006 4:15pm
Okay, so the pediatrician called this afternoon and had spoken to the Pathologist at TCH. She said she had good news, in a sense, but was still waiting on confirmation from another specialist and didn't have many answers for us at this time. The good news is that WORST CASE SCENARIO we are looking at a benign tumor. There are no cancer cells and no signs of infection; none of the cultures showed any bacterial, viral, or fungal growths. I asked about treatment if it was a tumor - removal versus watching it. She really just kept deferring to the specialist and said we'll just have to wait and see what he says. She also noted that the tumor was worst case scenario so it could be something even less substantial. I'm not sure what type of specialist handles non-malignant tumors but I'm hoping our visit with the Ortho Surgeon on Monday will give us more answers too. Seems to me, these docs would be the ones handling it if it needed to be removed. So there, you know what I know...not much is it?! At least they've ruled out cancer!
On a side note, I gave Mason a bath last night - wrapped her leg with a thick sock and plastic wrap/tape...it looks to me like her biopsy site might leave a heart-shaped scar. I can't tell if it's just the way the blood has dried to the clear tape (holding the skin) or if it's the actual biopsy site that I'm seeing but it's clearly in the shape of a heart. I'm sure it's just like an inkblot and probably won't be heart-shaped once it's cleaned, but wouldn't it be funny if it was? Just thought that was interesting.
Posted Sep 14, 2006 8:31pm
No news yet. I haven't received any phone calls from the hospital or the pediatrician so...I'm assuming that means that, so far, nothing is growing in the petri dishes to indicate infection. I asked the pediatrician on Tuesday what the plan of action would be if nothing grew. She stated that we would just continue to run blood tests, probably weekly, and do another MRI every 3 weeks or so.
Mason has been EXTREMELY DIFFICULT to restrain. She's been trying to crawl, stand, anything to get around. I'm going to ask the Ortho Surgeon on Monday, follow up, if there's a better way to support that leg while it heals. I'm thinking either a full cast or a little AFO or boot of some sort. I don't want her to break her leg, obviously, but I can't keep her tied down in the highchair or stroller all day either.
I'm hoping for news of some sort tomorrow.
Posted Sep 12, 2006 1:09pm
We're home. They released Mason from the hospital at 11am-ish. Her leg is splinted in the back with plaster and wrapped in a safety yellow bandage from her foot to her diaper. The surgeon said that once he saw how tiny Mason was, he realized that he only needed to make a 1cm incision!! He is VERY concerned that she might break her leg now that's it's been weakened from the biopsy sites. I haven't looked at it yet and probably won't until tomorrow when I have to clean it but I'm glad it's small. She's not released to daycare obviously and cannot put weight on it for at least 3-4 days. That's the hard part. As soon as we got home and she woke up a bit she tried to crawl and ended up with her rear high in the air and tried to swing her splint underneath her. She's going to be difficult to restrain. She drank a little juice at the hospital. She is a little sick to her stomach now - threw up some water just a bit ago. She was signing "eat" so I just gave her a few teaspoons of macaroni and cheese with some ice water and she's acting tired so...nap time.
They are expecting it to be a day or so before we know anything from the stains and smears; the cultures will take 2-3 days to grow. Hematology opted not to take a bone marrow sample from her hip today. They felt that if there are malignant cells, they would be detected from the sample that was extracted from her tibia.
Funny side story, as Mason came out of her groggy fog of anesthesia she was pretty unfocused and out of it. I asked her if she wanted something to drink and IMMEDIATELY she began signing "drink" and sat straight up! She must've been really thirsty. We didn't get Dr. Shaw from Anesthesia like I had hoped and requested but he was in the recovery room and checked on her when she came out which was nice.
She's sick to her stomach again gotta go
Posted Sep 12, 2006 9:19am
They took Mason back around 8am to get dressed in her TCH pajamas and for us to meet with the Orthopedic Surgeon. She went to the OR around 8:20am and we're just waiting right now. My husband, Corey, came with me this morning, which was nice. Yesterday I wasn't sure he was going to be able to come due to work. We woke up by 5:00am and headed up here...glad we left early b/c traffic was AWFUL! I'll post more info if I get it. Mason was happy and hyper all morning. She got a little pouty when they took her out of my arms to go to the OR.
Posted Sep 11, 2006 9:04pm
I've been getting lots of questions regarding what the biopsy will amount to for Mason. I spoke with the surgeon about 1.5 hours ago. He said the incision will be minimum of 1.5 inches but probably bigger. They are doing bacteria smears and cultures and having them reviewed by pathology. The Hemotologist may opt to do a bone marrow extraction from Mason's hip to delve into the unpopular and scary area of the possibility of cancer but as of 7pm the surgeon hadn't heard from that doc. That last one sent me into hysterics but I've calmed down for now and will proceed to freak out again in the morning I'm sure. Dr. Phillips, the Chief of Pediatric Orthopedics, is the doc I spoke to tonight but will not be doing the procedure. He said that they are hoping to make this a day surgery and to let Mason recover at home for the remainder of the week. We're planning on getting Ash home on Wednesday if everything goes smoothly with May.
FYI - the surgeon did say that we are basically "flying stand-by" for surgery tomorrow...they'll get us in and hopefully in that first spot but if something comes up we could get bumped to another time slot. Just wanted you to be aware so you weren't hanging on and expecting information by a certain time..I'll post it when I have it.
Posted Sep 11, 2006 5:35pm
Okay, so miracles do happen and Mason got a time spot for Tuesday morning for her surgical biopsy procedure. She's the first one in!!! Dr. Jacob Weinberg will be the Orthopedic Surgeon doing the procedure - pray for him to have steady, skilled hands. Right now the pediatrician is still waiting to get all the departments on the same page...she's asked that Dr. Palazzi, from Infectious Disease, submit any orders/blood work requests so that they can be performed while Mason's under anesthesia. She's also getting another division, Hematology maybe, involved so they can submit any orders. Apparently, my little gal's case is getting around at TCH...since all the Chief's are stumped they've been consulting I guess. We will probably have at least a one night, if not more, stay while Mason's in recovery. I won't know that for sure until after the procedure is done since everything depends on how bad it looks, size of the incision, and her reaction to the procedure.
I just called to request my favorite Anesthesiologist in the World, Dr. Thomas Shaw (who wears his Thomas the Train hat)...it's been put on the paper but, of course, cannot be guaranteed. He just did so good with her, and me, last time.
Dr. Isenhower has really busted her hump on this and I appreciate all of her efforts. If you know a family with a Down Syndrome kid, or any kid for that matter, who is not happy with their pediatrician... mention Dr. Dominique Isenhower to them. She's an associate at Bootin and Savrick Pediatrics in the One Fannin building by Woman's Hospital of Texas. I just think having a doctor who also advocates for your child is priceless. She's also not scared to admit that she's not the expert in all areas, but she researches, consults, and listens to parent requests, which is hard to find in a doctor.
Posted Sep 11, 2006 3:44pm
Well, I spoke to the pediatrician at lunchtime and she was still waiting to hear from the Orthopedic Surgeon, Dr. Phillips - she paged him at 8am and had left messages at his office but received no reply. She informed me that the MRI from Friday actually looked a bit worse than the one from the week before but said that the radiologist felt it was due to the smaller biopsy that was done so, at best, it was the same with complications resulting from the biopsy. Our pedi, Dr. Isenhower, still feels the best bet is to do the surgical biopsy and is trying to get it scheduled with the Ortho. She said it will be done this week, even if it means using another Ortho outside of TCH. She said the plan right now is to get the biopsy done in the next day or two, readmit Mason to TCH for recovery for however long, and then see what info we get from the bigger biopsy (I think she and the Infectious Disease docs are hoping that if there is something there, the docs will actually see it when they cut into her).
I didn't get Ashton today b/c I was worried that they'd schedule everything for today or tomorrow and she'd end up passed around again but now I'm regretting not picking her up b/c now it could be Wed/Thurs before we go in and I will have lost that time with her - insert GUILT here... I'm going to call my stepmom and arrange to get her either tonight or tomorrow. I just miss her too much.I'm planning on going to work in the morning and taking Mason to daycare and getting Ashton midday, while Mason naps, if I don't go get her tonight.
Hopefully the doc will call in the next hour or 2 to let me know if she's been able to reach the Ortho.
Posted Sep 9, 2006 1:42pm
So I just got a call from the Dr.'s office and Mason's MRI from yesterday showed no changes. The information was being reported to me by a nurse and Dr. Isenhower hasn't called me yet. I'm not sure what the plan is at this point but feel the bigger biopsy is probably the option that they're going to consider the strongest. When I find out if/when we go back to the hospital, I'll let you know. I'm so frustrated...I REALLY thought this MRI would show improvement.
Posted Sep 8, 2006 11:25pm
Well, we're home. Mason was brought into recovery around 7:00pm and was released from the hospital (thank God!!!) around 8:15pm. She was a bit dingy for awhile but we took her to Benihana's downtown for a celebratory dinner and that perked her right up. She ate shrimp, sesame coated chicken, fried rice, zucchini, tomatoes from her salad, and orange sherbet...she was starving and THRILLED to have such a feast in front of her. Of course, now she's out cold in her bed and will probably sleep pretty hard tonight with the lingering effects of the anesthesia but...I'm just so glad they didn't make her stay in the hospital. We didn't receive any results from the radiologist before we left the hospital but the nurses told us that her MRI was being reviewed tonight. I'm hoping this means that we'll get a call from her pediatrician tomorrow so I can plan out next week. I have to let work know what's going on and plan on when to get Ashton back home. If we're going to have to go back in for the surgical biopsy then I might have to consider leaving her in Austin a few more
days :o( I really think everything's going to look great though and this will all be a bad memory soon.
Her Anesthesiologist was GREAT and I totally recommend him if you ever have the opportunity to pick yours...his name was Dr. Shaw. He's an African American man in his late 20s, early 30s, and he was just wonderful to Mason and me. He explained the procedure better than any of the others did and he warned me of how she would look as she drifted off to sleep (fidgetty, crossed eyes, etc) but allowed me to stay in the room - some docs had been funny about that before. He stayed just outside the recovery room, and came in at times to check on her, until Mason left the hospital. He was very good and even sang her songs as she went under. I was impressed with this doc.
I will post if/when I get some information. Thanks for the continued support.
Posted Sep 8, 2006 5:08pm
Mason just went in for her MRI. They decided to do an x-ray before the MRI too. Her appointment was for 5:30 and it's now 5:05 so...who knew...TCH can be early on some things! I don't know that I'll be able to get back to the computer when she's in recovery but I will update as soon as I can.
Posted Sep 7, 2006 10:14am
Okay, so long story short...nothing got done today. We got to the hospital at 7:20 (woke up at 5 something)and were waiting for pre-authorization from insurance for the CT scan - took over an hour for that. Once we got that, the radiologist on site today had disagreed with the radiologist from yesterday regarding the use of the CT scan...this guy wants another MRI, which is fine, but delays the process. They thought they were going to be able to fit her in for an 11:30am time slot but the anesthesiologist isn't available at that time so we've been pushed back to tomorrow at 5:30pm. We will have to be here much earlier to meet with anesthesia and other personnel but...they assured our pediatrician that it would be read tomorrow so that we could know something before the weekend comes. Mason's favoring her leg a little more today than she did the past few days but...she's been moving around on it more too so...
I'm going to head home in a minute to take a nap and try to get some reports written for work. I've been trying to go in when I can to salvage vacation time but now I'm just so exhausted I'm going to relax the rest of today.
If anything changes I'll let you know.
Posted Sep 6, 2006 3:43pm
Okay, so they couldn't get the MRI scheduled until 5:30pm on Friday. Our pediatrician had pondered over waiting until Monday to do the MRI thinking that her leg would have more time to heal and give a better picture of what's going on but. After much thinking and listening to me cry about my worries with Mason, she decided to take the MRI slot for Friday and try to get something else done in the meantime so I can relax this weekend or at least feel better informed. They have scheduled Mason for a CT scan at 8:30am tomorrow at TCH - we have to be there no later than 7am for check in and sedation procedures. The radiologist that our doctor spoke to said that they can compare the CT scan to the previous MRI and find out if things look better or worse and can let us know results tomorrow afternoon. So that means we can work on getting Mason scheduled for a surgical biopsy, if needed, instead of waiting on MRI results to make the decision which would push back any treatment even more. I'm hoping the CT scan looks good and Mason shows improvement.
Posted Sep 5, 2006 7:10pm
Okay, blood test results are in and GOOD! The Sed Rate has dropped down to 27 - which is slightly elevated but not in the mid 40s like it was Thursday. I talked to the doctor on call and not our pediatrician but...the plan this afternoon was MRI if count had dropped and biopsy if MRI showed areas of concern so...I guess they'll be scheduling a MRI in the morning. I just hope a slot is available tomorrow. I'm going into work for as much of the day as possible tomorrow and will leave from work if they get her scheduled. Leave it to my daughter to be a medical miracle...she's always been the miracle baby but now she's taken it to the next level. Keep praying guys, it's working!!
Posted Sep 5, 2006 6:33pm
Okay, so I was able to work a 1/2 day today to salvage some vacation time. First thing this morning the pediatrician called and said that none of the cultures had grown over the weekend...meaning they have no answers. The big question is now: Is there an infection or is it something else or gone? The infectious disease doc wants a surgical biopsy of Mason's leg to be done. I begged my pediatrician to consider other alternatives before cutting Mason's lower leg open and she agreed. I don't want her to go thru an invasive procedure if it's not needed. The orthopedic surgeon also agreed so they had us come up to TCH this afternoon and redo bloodwork. If her white blood cell count is unchanged or has gone up then they will proceed with the biopsy, if it's lessened then we're looking at another MRI and possibly a bone scan...hopefully, to be done sometime Wednesday. I assume it'll be morning before we get the results of the blood tests. I'm really relying on that Divine Intervention!! Mason is still mobile as ever and doing great.
Many of you have asked how I am doing with the pregnancy and stress of this situation. I am fine. As bad as it sounds, I do forget that I am pregnant at times! I'm just so overwhelmed with Mason that I don't think about it often. I had a checkup today with my OB. I am 26 weeks along and my belly is measuring appropriately; which is a first for me, I usually measure small for date. Who knows, maybe this little guy will weigh more than 6 pounds! I haven't gained much weight - somewhere between 6-8 pounds total which has my doctor a little concerned but, given the current situation, she said it could be worse. I am eating quite a bit more than usual, but am walking around a lot at the hospital.
Thank you for all the prayers and I'll post info when I get it.
Posted Sep 4, 2006 9:45pm
Well, I continue to be amazed and baffled by my Mason. She's been crawling around and has been pulling herself to a stand on the ottoman just like everything's fine all day today. She still is careful with the left leg and I know it hurts but that doesn't seem to be slowing her down at all. I can't figure out if the pain has lessened or if she's just growing more tolerant of it. Hopefully, the infection is going away on it's own!
So far we haven't received any frantic phone calls from the Infectious Disease docs at TCH telling us to come back to the hospital so...I don't know if the cultures haven't grown or what's going on. I have a phone conference with the pediatrician at 8/8:30am...hopefully she'll have some news/info for us or at least know if we have to check back in to the hospital.
It's been great being home for the past couple of days. My Aunt Becky came down with my cousins, Kaycee and Sidney, to help us out and visit. She washed and folded all of our dirty clothes...they really piled up while I was at the hospital. They helped us sort thru all of Ashton's old clothes that I'm saving for Mason and she even cleaned out my van! It was GREAT! The girls kept Mason busy and played with her...she's a little more spoiled now. My mom even installed a closet organizer for the girls' closet so that I can start getting their stuff into the one bedroom. Now I just hope we can stay out of the hospital long enough for me to get the clothes into the closet!
My dad, stepmom,and twin brothers Justin and Chris, came and picked up Ashton yesterday too. They are taking her back to Austin for the week so she can have some consistency in her days and we don't have to worry about her not getting enough attention. It's driving me and Corey crazy for her to be gone. She's never been away from me for more than 3 days and it's going to be 7 days this week - she comes home next Sunday! I'm hoping to have the room ready for her when she comes home...I'm being the eternal optimist and hoping we get to stay home and out of the hospital.
I will post tomorrow when I get any sort of news about the tests or know what's going on.
Posted Sep 2, 2006 12:59pm
Good day to you all! We slept great last night in our own beds and are happy to be home. I want to clarify a few things for everyone. I've received a lot of questions and realize I may not have been too clear in my prior postings due to fatigue and worry.
1. Mason is NOT on any antibiotics at this time. She was released to the house unmedicated. The reference to antibiotics that I made in a prior post was a single dose that was given prior to her bone biopsy. Due to her heart condition, she must have antibiotics prior to any dental work or invasive procedures to protect her heart from infection and/or viral damage.
2. We are giving her Tylenol or Motrin for pain as needed. I gave her some before bed b/c her biopsy sight was slightly swollen but she's doing good today. She's crawling all over the house and VERY happy! Note the new main page photo of her as we were getting ready to leave the hospital.
3. The time at home is, unfortunately, temporary. From what the Infectious Disease docs and our pediatrician have told me, we will probably be checking back in to the hospital once the bone cultures have grown so that treatment can be started. Our pediatrician just felt that being home for the weekend would be good for us and she knew the results would be a few days away. We're aiming for Tuesday to have news and know if/when we have to go back.
4. I am not ruling out Divine Intervention. We all hope that God's healing touch will heal Mason's leg but know that, even if this is the case, there are more tests to be run to make sure the infection is gone...that's where the hospital stay comes in. I am sure the docs (and I) will want another MRI, blood tests, and bone scan, at the least, to see if it's grown, shrunk, or stayed the same.
I hope this has clarified some things for you all. Please post any questions you have or feel free to email me at jennilu@sbcglobal.net if you want additional info.
Thank you for all the wonderful gifts, visits, calls, email messages (we received many through the hospital's website), and prayers!
Jen
Posted Sep 1, 2006 9:49pm
Well, we are home!! Hallelujah! It's so nice to be home among my own stuff (and mess). Mason is crawling all over the place and smiling like you wouldn't believe. She's really happy to be home I think.
What ended up happening is this...They took the biopsy yesterday but it has to be given 48-72 hours for the cultures to grow to see what, if any, bacteria/virus/fungus is causing the Osteomyelitis. Her pediatrician called me earlier and said that she was going to ask the Infectious Disease doc if we could be released to the house if no treatment was going to be started this weekend. Her reasoning being that all we would be receiving in the hospital was vital sign readings and regular doses of Motrin - which I can do at home. The biopsy specimens are being followed by Dr. Palazzi at TCH and she will call us if anything starts to grow that needs to be treated. The plan right now sits with us laying low this weekend, checking in with pediatrician Tuesday and probably going up for more tests or back into the hospital Tuesday. IF Mason begins to run fever or regress in any way we have to go to the ER quickly.
I'm happy to be home but want everyone to realize that, most likely, Mason will be re-admitted once those cultures grow. Thank you for the support this week and these past 18 months.
Posted Sep 1, 2006 6:55pm
Hi everyone this Mari, Jen's friend. She asked that I post this message so everyone will be updated. As of 6:oop.m., the doctor has decided to release them for the weekend. They have to wait for test results before they can do anything so they thought it would be a comfort for both Mason and Mommy to go home for the weekend. Jen is very excited, and I am more than sure once Mason sees her own place she will be over joyed! She may never stop clapping!! Well, this is all the news for now. Jen will post another update as soon as she can. Take Care and God Bless.
Posted Sep 1, 2006 12:20pm
Okay, I still don't have the biopsy results yet but wanted to tell you how last night went. My baby does not come out of anesthesia quickly... she was pretty funny. When they were giving her the she was really lovey dovey and kissing on everyone, blowing kisses, crossing her eyes etc - I thought it was cute to see. When she was waking up from the it wasn't as cute but was still pretty hilarious - in a sick, twisted, sarcastic way that only a few people like me would enjoy but still...funny. They brought her into recovery around 5:30pm and she was out - mouth open, snoring lightly. An hour later, no change, she hadn't even wiggled a toe so we started wiping her with cool cloths, taking off blankets, talking/singing, she did not react. The nurse finally sat her upright and supported her head (like you do a newborn with no head control)and Mason started twitching. She finally woke up enough to drink juice but couldn't sit up steadily. She was in and out but was able to do "Patty Cake" as she woke up. They released her to her room at 7:30pm and once we got up there she fell asleep. She woke up bright eyed and ready to go at 10pm and was frantically signing "drink" and "eat." The CNA brought in a heated up tray from the frig and Mason ate like a big kid: chicken nuggets, carrots, applesauce, peaches, 2 boxes of apple juice and then she commandeered my apple pie and ate it. I've never seen her eat so much in my life but I realized at that point it had been 24 hours since she'd eaten or had liquids so...They took out her IV since she'd eaten so much and that made her happy.
Around 11:55pm Mason did the best thing I've ever seen her do...she put her bad foot flat on the ground and stood up with some support from me. She hasn't done that since last Friday night. The resident was in another room with a patient so I just jotted a note on a post-it and stuck it to her file. He came in early this morning and was dumbfounded, as was her pediatrician and Infectious Disease doc. Apparently my child is the exception to the rules. She did it again this morning. She's not bearing much weight on it but she is putting it on the floor. They've mentioned doing another round of tests to see how the infection panels look and are considering another MRI (in the next few days)to see if the area has grown/shrunk in size. This is just highly unusual for a kid with Osteomyelitis and Myocitis to be so resilient and to be using the infected limb!
This morning she ate a huge breakfast and played a lot. She had some visitors from the Meyer Center Down Syndrome Clinic come and play with her too...thanks for the visit Dr. Madduri, Dr. Peters, and Nurse Caroyl! It was great to have you there. She's napping right now so I'm running to McDonald's (to use my gift card!) and get a good lunch.
My dad and stepmom are coming down Sunday and taking Ashton to Austin with them for the week so that she can have some consistency in her days. It's going to be rough. I've never been away from her for more than 3 days but I know she needs a schedule and right now we just can't provide a good one for her. I cry every time I think about her leaving (here I go now). I know she'll have fun though hanging out on Lake Travis and feeding the deer. She even gets to go see her Aunt Kara play in a volleyball tournament for Sul Ross University at the end of next week!! I'm going to buy her an official ball and see if the team will sign it for her and maybe one for Mason too.
Thanks for the prayers.
Posted Aug 31, 2006 5:22pm
Hello there. I know you guys are all wondering what the heck is going on and I wish I had positive news to report but I have nothing. They just started the bone biopsy on Mason about 30 minnutes ago. Long story short, they doctors doing the biopsy began to worry about her heart and how to proceed with anesthesia and, in the process of waiting for an answer from her cardiologist (who actually had cleared her last night for anesthesia but nobody in Interventional Radiology bothered to read the note), she lost her early spot. Once they realized that her heart was good to go they started debating about what to give her...my pediatrician was ready to kill the IR guys! So, now her early spot has become a 4:30pm spot and we won't have results, even priliminary results, until tomorrow. So no treatment has been started. If this thing has spread and damaged more muscle and bone b/c of the waiting and delaying that's been done...I will be looking for a good lawyer. I have to head down and see if she's in recovery. She's been without drink or food since 10pm last night b/c of the need for an empty stomach and the lack of a definitive time slot. I feel so bad for her and just feel helpless in general. I CANNOT wait until they make some sort of treatment decision and get my baby on the road to recovery. I'm starting to feel a little put out with Texas Children's Hospital at the moment but...I'm sure when they get her treated I'll like them again. Pray for my baby s...Ashton has strep throat and is home with a 103.2 fever at the moment and on antibiotics.
I was laughing with my friends Katie and Leighane earlier...it used to be "when it rains, it pours" but now I think the better saying is, "when it rains, it's a freakin' hurricane! Run!"
Thank you to everyone who has helped us. My dad, Mason's Granddaddy or G-Daddy Mike, stayed with her today and walked her down for her biopsy while I met Corey at Ashton's dr. appt and ran some errands. All the wonderful visitors: my brother Josh, boss Sandra, Grandmother and Granddaddy Shuman, Brother Rodney, Laura and Elizabeth Rogers, Dr. Madduri and Dr. Peters from the Meyer Center...it's been so wonderful. All the email cards that have come via the hospital website and online; the gifts have been wonderful too - thank you everyone...
Mom - thank you for EVERYTHING you've done...bringing me dinner every night, taking care of Ashton when Corey and I can't, driving the hour up and back each day after work...everything! Thank you.
Okay, enough with the Miss America portion of this email...I will update when I have news to report.
Posted Aug 30, 2006 4:07pm
Here's the email my mom sent out...she's better at the details then I am right now so I thought I'd post it for everyone.
The MRI was done this morning and they already have the diagnosis. She
has infections of the bone (osteomyelitis) which has spread to the muscle
(myositis) and skin (cellulitis). It spread from the inside so they
will be taking a tiny graft of tissue tomorrow to narrow down the culprit.
Her blood count last night had elevated & elevated some more today.
However, she was putting weight on her leg today trying to get to her lunch when
I spoke with her mama a minute ago.
Anyhow, this means that she'll be there tonight & probably tomorrow
night with an IV of antibiotics, once they figure out which ones to give her.
Then, hopefully, they'll release her to come home & receive her
antibiotic on a more permanent prep area on her body once or twice a day.
Once everything is figured out as far as sending her home, Jen will
speak with the Alvin Community College to see if Mason can still come back to
pre-school & receive her IV there. They're a great facility &
hopefully will work with her. However, if that's not possible, I'm sure we'll be
able to line up volunteers, aunts, uncles, grandparents to help out...we
have such a great support network out there!
So, at least we know what's happening & are no longer in the dark. Jen
is still at the hospital, Ash is here with me at work today & Corey is
trying to catch up on some work. Hopefully, we'll be able to relieve Jen for
awhile while she gets to run some errands & get some fresh air.
Hope everyone is fine & thanks for all the prayers.
Kathy
Posted Aug 30, 2006 3:49pm
Okay, we have a diagnosis finally...actually 3. Mason has Osteomyelitis, Myositis, and Cellulitis...translation...infection in the bone, muscle, and skin of her lower left leg.
She has to go have a bone biopsy at 2am in Radiology to determine what the guilty bug is that is causing the infection. Once they biopsy, they will start IV antibiotics. The nurse told me that the IV usually lasts for 4-6 weeks and involves an extended stay in the hospital.
After freaking out a bit and talking with the resident, it may be possible for them to insert a central line and release her to us for treatment...especially if insurance will pay for home health or if I can get my step mom Pam to come down and stay with her or talk my wonderful grandparents into watching her while I work during the day. If that's not a possibility, I'm going to ask for a transfer to Angleton-Danbury Hospital (if they can deliver the same level of care) so that we can be closer to home. It was also mentioned that with the IV she might be able to return to daycare b/c she'll just have the equivalent of a g-tube/g-button (just a little plastic port on the outside of her body) for antibiotics to go thru...who knows?
They were able to do her Echo as well this morning just to check the number of VSDs that she still has...no results yet. Seeing as how we'll probably be here thru Sunday at the earliest, they're still trying to schedule her hearing test too.
Thank you for all the prayers and please keep praying that the infection "bug" is more minor and treated with a less severe on the system antibiotic.
Posted Aug 29, 2006 6:34pm
The MRI will happen in the morning for sure. We're looking at an 11am slot or possibly earlier if one opens up. The good news about doing it in the morning as opposed to tonight is that they are going to be able to work in her echocardiogram and ABR hearing test into the sedation window. Mason has had such a hard time with sedation in the past, I asked if they could try to incorporate her echo and ABR into the plans for tomorrow. She's due for both and we've had to reschedule a few time already due to congestion so..this just works out well for everyone...especially Mason.
My mom mentioned the possibility of a toddler fracture osteomyelitis but there's also a possibility that it's a spiral fracture...tomorrow's MRI should tell us a lot.
Thank you for the prayers. I have updated her photo gallery with some cute hospital pics too.
Jen
Posted Aug 29, 2006 6:31pm
Jen called & the orthopedic surgeon said something showed up on Mason's
tibia in the bone scan. He thought it was either her tibia or
osteomyelitis. When Jen called to report in, I was actually on a
website
for osteomyelitis. It popped up when I did a search on her symptoms.
From what I've read it's an infection of the bone. This website had
good info on the subject: http://www.keepkidshealthy.com/WELCOME/infectionsguide/osteomyelitits.html
If it's a fractured tibia, they have something called a toddler
fracture. See this website if interested
http://www.drhull.com/EncyMaster/F/fracture_toddler.html
So, we'll wait on the MRI & the doctor's diagnosis. Josh is with Jen
this afternoon & said that they'd called & requested that Jen not feed Mason
any more food. They're trying to schedule her MRI for this afternoon or
early evening.
I'll keep everyone informed. Jen was going to try to update the
carepage too when she was able.
Kathy
Posted Aug 29, 2006 12:50pm
Mason had her bone scan this morning and results should be in any minute. My pediatrician has called and lit into the resident doctor for not acting faster regarding the ortho consult. I could hear him on the phone with her and they were NOT getting along. Dr. Isenhower, our pediatrician, is TICKED that it took until 7pm last night for the ortho consult and feels the resident acted too slow. It's nice to know my doctor is so concerned. She was also upset that nobody bothered to call her with the results of the consult...
I'm requesting inpatient physical therapy to make up for the therapy we're missing today. Hopefully they'll pull her and work with her today. It's not looking like we're going home today like I had hoped but...there's still a few more hours left for that decision to be made. Overall, Mason is happy and doing well...as long as you leave her leg alone. She seems to be able to move it a bit more. When they were strapping her down for the bone scan this morning, she was kicking her good leg like crazy and her left leg moved slowly up to her chest so...that's improvement. I overheard the doctors discussing the possibility of osteoporosis or some other bone related disease...hopefully the scan will tell them what they need to know.
Thanks for the support and prayers! I'll post again when I get results/decisions. FYI - when they weighed her this morning (AT 5AM!)she was 17 pounds 3.8 ounces!!
Posted Aug 29, 2006 12:44pm
This is a copy of the email my mother sent out last night - it describes way more than my last post regarding what happened prior to Mason being admitted and what's happened since.
Mason started fussing during the night on Friday. Corey was up with
her & her leg was hot but they weren't sure if it was her leg, her ears or what. Saturday, Jen finally thought it best to have a physician check her out at the Urgent Care in Angleton. The PA couldn't figure out what was wrong. Her heart was fine, ears clear, lungs, everything sounded fine. She sent Mason home. By Sunday, Jen felt that Mason was definitely not putting her leg down or putting pressure on it. She screamed even when a diaper was changed. If you held her away from your body like normal to play, she
attempted to attach herself to you. Kind of like she was insecure.
And she trembled and cried. Corey had to work so I went too along with Ashton. We went to Tx Childrens around Noon. They finally took her in & examined her around 2:30pm.
It's very obvious she doesn't want anyone touching her leg. She's
eating, drinking & playing just without moving her leg. And she holds it up high so it won't come into contact with the floor. They x-rayed it & found no fractures. They did a full work up with only one thing out of wack. There's a slight elevation with one of the infection panels. The doctor on call at the pediatrics office & the ER doctor felt it best to admit her. They were afraid to send her home an hour away & have something happen. Her right foot is prepped in case they have to start an IV, so now she holds both
legs up high & won't stand at all.
Today not much happened. Lots of sitting around & waiting. To make it short, just say an order was put in for the orthopedic surgeon to look at her & he finally arrived around 7:30pm. He looked Mason over & said he wanted a bone scan done tomorrow morning. Depending on what that shows, he might order a MRI. They had to insert another place on her hand to get it ready for an IV. Because her veins are so tiny, they attempted it & failed a few times. Finally went and got one experienced in tiny veins. So she's prepped & waiting for tomorrow morning.
Jen said she was crying at first. Now she's laying on her lap. She
said the baby kicked & Mason sat up & look down at her belly. She laid down again, the baby kicked, Mason sat up & looked at Jen's belly again & tried to pull up her shirt. So, I think she's fine & back to herself. She's just sick of all the prodding & getting drawn & getting stuck with needles. Poor baby.
Jen or I will try to update y'all as we find things out. If anyone
thinks of anything that this might be or have any ideas, please e-mail or call Jen at the number above. Hopefully, the bone scan will show something.
Keep Jen, Mason & family in your prayers please.
Posted Aug 28, 2006 8:24pm
I don't have much time...I have hijacked a computer at Tx. Children's to update you all. Mason was admitted to TCH last night around 10pm after being in the ER for 9 hours. She cannot move or use her left leg. X-rays are all clear, blood tests are all okay. There was one slight elevation in an infection panel but it was still within normal range. She's in a great mood unless you mess with her leg. They will be doing a bone scan at around 7am to determine if MRI is needed. She's getting another IV put in right now and screaming so I've got to go. She has one in her foot already but they can't use it for bone scan b/c it'll skew the results. We're in room 1521 on the Cardiology floor. Hospital # 832-824-1000.
Posted Aug 16, 2006 9:45pm
Okay, so weight isn't maintaining like I had hoped...with mobility comes weight loss so I should know better than to get too excited. Mason weighed 16 pounds 12.8 ounces yesterday at her weight check. BUT, she's moving around a lot more and had been a bit stuffy-nosed this week. She had PT at TCH yesterday and walked the perimeter of the room with support at the hips; it's a LARGE room. She also had ECI services today for PT and OT. She did very well. The OT that's filling in, our regular OT is on maternity leave, was very impressed with Mason. She even commented about the fact that Mason was able to breast feed as an infant. She said in all her years and all the Down Syndrome children she's worked with, Mason was #3 to breast feed without problems. She was thrilled at her straw drinking, ring stacking, and block building abilities. It was nice to see someone so genuinely amazed by my girl. We're amazed all the time but when the outsiders come in and I see the same looks on their faces it makes me feel good about how far Mason has come.
We're looking at a mid-Sept date (possibly 9/11) for Mason's echo and ABR if the hospital can coordinate the services so she only has to be sedated one time. I'm waiting to hear from her Cardiologist on that.
Just one week left until Mason's starts the college Lab School. I'm so excited...I can hardly wait for 8/24 to get here. I just think she's going to do so good there. The staff is looking forward to her coming and they're so eager to learn about ways to help her, it's just so nice.
Posted Aug 9, 2006 12:06am
Mason did very good in therapy today. She's walking more independently using a walker...and yes I'm taking about the "medical walker" not a baby walker. She enjoys the hands off approach that the walker allows for. She was weighed today and is 17 pounds 4.6 ounces!!! Way to go big girl!!
Posted Aug 2, 2006 2:59pm
Weight check Tuesday went well. Mason is 16 pounds 13 ounces, which is unchanged from 2 weeks ago but she's grown one whole centimeter in length...69.2cm (27.25 inches). I pushed back her ABR and Echo until Sept b/c my insurance deductible starts over again September 1 so I won't have any news to report regarding her hearing or heart until then.
And now for the shocking news...Corey's transmission finally went out in his Civic and the cost of repair exceeds (actually doubles) the current value of the car so we had to purchase a new car. He's taken over my Highlander and I've been forced, against my will, into a minivan (Honda Odyssey). I tried an Expedition but it got 7-9 miles per gallon during the 24 hours that I test drove it so...off to Honda I went. I actually cried in the showroom at the thought of it and have cried a few times since buying it. It is nice though and Ashton thinks the doors "open on magic." For those of you who know me, you how much it bruised my ego to purchase it so PLEASE...don't rub it in.
We're going to take the girls to see The Wiggles in Houston tomorrow evening - it's a surprise. I'll try to get some good pictures.
Posted Jul 30, 2006 11:43pm
We've had a good week; visited family in College Station this weekend. This afternoon, while at my Uncle Mike and Aunt Marilyn's house, Mason stood up all by herself...no hands!! She had pushed up to a bear crawl on my legs with her little bootie in the air and then just lifted her torso to a full stand. It was wonderful to see. I, of course, gasped and started crying so she fell to her rear and started sticking out her bottom lip about to cry...thought she'd done something bad. We all clapped and cheered (she did too) to make her realize we were proud of her.
The teething situation is becoming clearer as her teeth come in more. I originally thought she was getting one molar and some canines in addition to that top middle tooth but...she's getting 3 molars and her top middle tooth. Strange growth pattern but all the literature says that goes with the syndrome; mis-shapen teeth that grow in abnormal order. Her teeth seemed to be shaped okay though. Her teething rash is looking better but still not normal. She looks like she has acne around her mouth and up onto her nose. Her stomach is a little sensitive with the teething so I'm worried about weight gain this week but we'll find out Tuesday how that's going.
Posted Jul 24, 2006 9:15pm
Mason's just come so far this summer. I hate that I have to go back to work this Wednesday...summer just keeps getting shorter and shorter. FYI - House Bill 1 passed during the Special Session and enacted legislation that there will be a standardized start date of August 23 for all Texas public schools beginning with 2007-08 school year!! Good news for most of us.
Mason pulled up to a stand all by herself on the coffee table yesterday! She's been unable to do this because it was so high but she's built up those upper body muscles. She's saying "ball" now - it's "ba" with a funny light "l" on the end - very sweet. She's graduated to the Sara Rosenfeld Johnson straw therapy kit and is on straw #2 and doing well - good lip closure, great suction, very little liquid loss when drinking - it's just such amazing progress in about a week's time. Her rash on her face is pretty much the same. I honestly think it looked better with just using the Eucerin rather than the prescription Loprox cream. I'm going to discontinue the cream for now and go back to the Eucerin.
Ashton's looking forward to going back to her school at the college lab school - she really misses her friends. Mason will be staying with our friend Shelly this week and Mari for the interim time until she can start the college on August 23 (age 18 months). I'm going to take the next couple of weeks to try to prepare the Toddler Room teachers for Mason's petite-ness. I have to find a feeding seat that will fit their tiny tables but allow Mason to see over the table. I'm designing a quilted, wide body seatbelt of sorts that I think will allow her to sit in the regular chairs like the other kids but keep her from falling out since she doesn't know how to exit a chair gracefully yet (she just goes head first in a nose dive).
I'll let you know if I'm successful and will keep you posted on how this week goes.
Posted Jul 18, 2006 9:17pm
Okay, lots of appointments today. I had my ultrasound to check the baby's anatomy. Everything looks great: good heart, good limbs, etc. Ashton was amazed by the whole process and was able to label all of the parts before we told her what she was looking at.My brother, Uncle Josh, came and watched the girls in the waiting room until they were able to come view the ultrasound - thank you Josh. Corey wasn't able to come due to work conflicts...
Mason had to go to the pediatrician because she has a nasty rash on her face. The rash, they say, is due to teething and yeasts that disturb the skin around the mouth. I put Eucerin on it the past 2 days and it was beginning to look better but they prescribed Loprox cream(non-steroid) and we'll start that tonight. The doctor said the only real cure is when teething stops.
Mason's weight check went really well too. She's up to 16 pounds 13.2 ounces!!
Physical Therapy was interesting. After such a long day and so many other appts, Mason was pretty ticked when PT started messing with her. She held it together thru the hour though (for the most part) and passed out in the parking garage as I loaded her in the car at 5:15.
Posted Jul 13, 2006 11:02pm
Okay, busy week but man have we enjoyed it. Mason had a weight check and PT on Tuesday at TCH. She weighs 16 pounds 5.6 ounces!! Steady growth - I've quit hoping for huge amounts of gain and am happy with any gain at all. Body Mass Index is 15.6ish so all's well. Results came back from her blood work checking for Celiac Disease - negative results so we don't have to adjust diet.
Her cervical-spine (c-spine)x-ray also came back within normal limits. This is typically not done until 3-4 years of age but I requested an early one before enrolling her in group daycare so that I could feel a little more at ease with her participating in the activities. For those of you who don't know...C-spine x-rays are a necessary thing with Down Syndrome children to rule out Atlanto-axial Dislocation...basically an unstable portion where the spine meets the neck. The odds of having the instability are greater in children with DS and if it is present then they cannot participate in many sports and activities due to the danger of paralysis - diving, gymnastics, contact sports, pony rides etc. We will do another one at 3 years to make sure nothing's changed and to be on the safe side - sometimes when they're done so soon the child's anatomy changes with age.
Today we went to a monthly Down Sydrome Assoc. of Houston meeting. VERY informative. The guests speakers taught some oral motor exercises and made suggestions for various activities for speech and language development. The irony of this is that today Mason also took her first sip of juice from a straw all by herself!! I didn't have to squeeze the juice box or hold the end of the straw for suction or anything. We were at McDonald's and she kept spilling juice all over herself...I was squeezing the bottle to help her at the time. I stopped squeezing it and she just sucked up the juice by herself. I know this seems trivial to many people but this opens a whole world of weight gain and dietary doors for her...plus adds some needed independence with drinking. Up until this she's had to totally rely on someone to hold the cup or empty liquid from a straw into her mouth. This should make daycare easier too!
Posted Jul 9, 2006 9:39am
We're doing well. We enjoyed a week in Austin last week and had a busy week at home this week. Mason is getting stronger every day - it's going to make going back to work in 2.5 weeks REALLY difficult. I can see how much progress she's made since I've been home working with her constantly...
She's trying to pull herself up to stand on the coffee table -she's just a little too short to get a good grip on it though so she does a half-kneel instead. She's been pushing up to where her butt's in the air and feet flat on the floor from a sitting position. She can pull up to a stand when the cushions are off the couch and even cruises down the length of couch occasionally!! It's wonderful. Her face is pretty broken out from eating so many foods - not sure which ones irritate her face but that's the price you pay for eating table foods.
Mason's cutting 3, maybe 4 teeth currently! She's still not fussy...how perfect is that?! She getting her left top middle, a canine on the top left, and feels like a molar on the top right. I also feel a little ridge on the bottom right molar area so...she's going to be one snaggle-toothed little girl. I think we're going to have to dress her up as a Jack-o-Lantern this year for Halloween. The only teeth that are side by side are her bottom middle ones. In fact, up until a week ago that's the only teeth she had.
We participated in an infant massage class at Texas Children's for the past 3 days. They were teaching others how to give/teach infant massage so we were the guinea pigs but we learned a lot in the process. Ashton went all 3 days and learned some stuff as well. Mason really enjoys butt-cheek rubs! Every time she'd start to get fussy I'd rub her little bootie this one particular way and BAM...she was cool and calm. It was pretty funny to witness.
Posted Jun 22, 2006 9:48am
Mason is just progressing so well these past few weeks - I think we're just totally emersing her in communication and feeding. Yesterday evening she started signing "milk" while she was trying to drink from her straw! This is huge - once she has it committed to memory she'll be able to tell us when she's thirsty!!! My mom was sitting there watching and started to cry she was so happy - she said it was like watching the part of The Miracle Worker when suddenly you see things "clicking" and Helen Keller finally understands the concept of sign language...Mason was very similar - she was REALLY excited and would sign "milk," open her mouth, then look at her cup and clap for herself. I also swear I heard her say "wow" yesterday too. All 3 of her ECI therapists came at once yesterday and Mason had a blast. She was showing off, pushing up to stand in her chair (she can't pull herself up to stand but she can push up on her chair), playing pat-a-cake and doing all her own movements...she even waved bye and blew kisses when they all left. It's just amazing how far she's come since I got off work for the summer...this makes we wish, even more, that I didn't have to work but...gotta pay those therapy bills!
She's also cutting a new tooth - top left tooth - this makes 3 teeth total.
Posted Jun 20, 2006 9:22pm
Well, we've been busy at the hospital this week too. Mason went to the Meyer Center for Developmental Pediatrics at TCH yesterday for her 6 month follow up - doing well and impressed the doctor with her communication and social skills. She waved bye to the dr, said "momma" a few times during the visit and signed "more eat." She's really doing a good job of showing off for her doctors this month!
Today she had a weight check and PT at the hospital. She weighed 16 pounds 1 ounce!!! Granted, she did eat a bowl of potato soup an hour prior but that was naked weight!!
Tonight she's been putting blocks IN a bucket and playing with her "Kathy" (Ashton calls my mom Kathy instead of Gram). Mason has developed a really funny little laugh - for you Gayle's you'll recognize the silent- bouncing laugh that we all do - just imagine a little squeak thrown in for fun and you've got Mason's really big laugh. It's pretty funny.
Tomorrow the ECI therapists are coming out - she has speech, OT and PT all tomorrow b/c our schedule is so cramped this week and we're gone next week so..
Posted Jun 17, 2006 4:05pm
Well we're back from our vacation to Wimberley. It was just us girls...me, my mom, Ashton, and Mason. We had fun. The girls went swimming in the Guadalupe and Blanco Rivers...Mason had more fun in the water than Ashton. We ate out a lot and think Mason may have gained some weight, as an added bonus. Everyone's doing well in general and we have lots of appts this week at Tx Children's so I'll post when I get info.
Posted Jun 9, 2006 6:58pm
Lots of news to tell today.
1st - Mason had a clear cardiology check up today. She still had some visible VSDs (holes) in her heart but no audible murmer. The lines in the muscle tissue of her heart were also visible but seemed to be fading from last time - Dr. Rivenes believes they're due to her sinus/viral issues. No medication still!
2nd - Ashton thinks that her "heart is broken" so Dr. Rivenes listened and said it was beatiful and not broken - this made Ash very happy. However, she does have a heart murmer but the dr. said it was nothing to worry about - just a buzz sound as the blood flows thru - I think she called it a Still Murmer.
3rd - Ashton gave herself a hair cut Wednesday night - about 8 inches of length GONE! She had it professionally fixed yesterday and now it's shoulder length - very depressing but I know it'll grow back so...
4th - The last news is exciting - family and most friends already know but for those who don't...I am pregnant again and due December 10th. We were not trying so this is quite a shock all around for us. I am apparently the 1% that the pill doesn't work for! Anyway, I had Chorionic Villis Sampling (CVS) done to rule out any genetic issues. I received my preliminary results today - 46 chromosomes (nice and normal) and it's a BOY! Now I have to figure out what to do with a boy in this pink infested, dress up clothes stuffed house! No names yet so don't even ask - we're still reeling from the results...I was just sure it was another girl.
Posted Jun 7, 2006 9:40pm
15 pounds...15 pounds!! She finally weighs 15 pounds!! Mason had her 15 month check up today - complete with 3 shots in the thighs. She did very good and showed off for her doctor...said "mama" and signed "more eat." I was thrilled that the dr. got to see that instead of me having to tell her. Mason now weighs enough for allergy medicine so we have Clarinex - hopefully this will help with the allergy that turns to sinus infection that makes the nasty cough yadda yadda yadda...I'm looking forward to a relatively "snot free" summer!
Ashton had her 4 yr check up - complete with 4 shots...the lollipops made it better quickly though. She's healthy and in the 75% for weight and height so...doing good.
Posted Jun 6, 2006 9:21pm
Mason had therapy at TCH today. She did fairly well - fussed a lot but did the therapy activities. We had her weighed at measured - she's 14 pounds 11.8 ounces and 67.2 cm long. She's a runt but she is gaining.
Ashton's party went great - her little girlfriends from ACC Lab School came as well as her cousins and she was thrilled! My grandparents let us us their house and the lake for the afternoon and we just had fun playing in the sun. There are some great pics of the girls and I'll post them soon.
Posted May 30, 2006 3:09pm
All's well in the Taylor house. Mason's sinuses seem to be letting up a little bit. This morning she woke up and didn't have a plugged nose or eyes so...hopefully she's on the mend. She and Ashton both have their check ups next week - shots and everything - should be a BLAST for me! We're skipping PT at the hospital today due to nasty weather but I'll let you know how her ECI therapy goes tomorrow.
Ashton's 4th birthday is Thursday!! She's pretty excited.
Posted May 23, 2006 7:25am
Mason's 15 months old today!!! She's still armyman creeping but loves to stand and eat at Ashton's Play Doh table - it's the perfect height.
She's been sick off and on for 2 weeks now which is miserable for her. She has such narrow sinuses that it doesn't take much to clog her up completely. Depending on how she is today we may have to cancel PT at the hospital. Last Tuesday when we had her weighed she had lost quite a bit of weight from being sick (she weighed 13 pounds 13 ounces). I'm hoping she's gained some of that back...she can't afford to lose any more weight - she's tiny as it is. I'm going to try to get her in to see her pediatrician today to get some guidance on this cough - Robitussin only works for a little while.
The sitter is having to take the week off so we're doing some creative manuevering of schedules. Can't really ask friends to take care of her when she's icky sicky so...pray for us.
It's the last week of school down here and my schedule is PACKED with ARD meetings and parent conferences.
Please pray for my Mason to gain her weight back and get rid of that nasty cough. Thanks for the support!
Posted May 11, 2006 2:48pm
FYI - Mason was weighed on Tuesday at the hospital and was back down to 14 pounds 4 ounces...not too bad considering she was sick but...
She's still kind of out of it. Now she seems to have a sinus infection so we're starting antibiotics for that - the doctor just called it in and didn't make us come in for an appt. Hopefully she'll get to feeling better soon. We're also going to start these sinus washes that my friend Laura Rogers told me about. She says they've really helped her little girl. Thanks for the prayers,
Posted May 7, 2006 3:58pm
Mason seems to be feeling much better but Ashton is not. She seems a bit more severe than Mason did...so I'm wondering if Mason did actually have some sort of virus or if Ashton picked up something in the ER. Mason was only vomiting when her congestion was severe (first thing in the morning) - and she could eat and hold down foods like crackers/cereal. Ashton cannot...everything is making a second appearance and she's not the least bit congested. She just seems to have something else going on. There were so many sick people in that ER that it makes me wonder if she caught something more significant than what Mason originally had. She's whiny but doing her best - keeps falling asleep and is scared to eat anything.
Mason's personality seems to be coming back today. She's got more energy than yesterday and isn't so pathetic looking.
Pray for my girls...and for us adults...don't want this to get into everyone's system!
Posted May 6, 2006 7:48pm
Just a quick update. Mason has been extremely lethargic and tired today. She's not necessarily unhappy but she's not her usual smiling self either...she just kind of stares at us and slowly blinks her eyes, very un-Mason-like. She was so "low key" that she even laid on the couch with me this afternoon to watch Star Wars III: Revenge of the Sith. She stayed awake through the first half. I think the effects were pretty impressive to her - lots of lights and sounds.
Mason slept until 10am and was trying to fall asleep again by 12:30pm...she's sipping her Gatorade Rain flavor (doesn't like anything else) and eating crackers right now with her Daddy. I was able to get a bowl full of applesauce in her for breakfast and a stage 2 green veggie in her at lunch. She's rejecting my favorite flavor of jell-o, apricot...so I'm going to make something more traditional when I get off the computer. It was suggested in a post by David that we try popsicles so...made some out of powdered electrolytes and Gatorade - freezing them right now. I also made some finger food frozen pops (coined sized)using an egg-carton so she could feed herself. She's pretty independent and likes to do it herself so we'll see if that helps.
Big sister Ashton has been a huge help today. She keeps checking Mason's diaper to see if she's wet it and then reports to me immediately that "no pee yet Mom." She really wants to help. My mom came over to check on all of us and sat in the bathroom, holding Mason, with the hot shower running to open up her sinuses. Corey just got more Dimetapp for Mason and we're about to do another breathing treatment. I think once the congestion goes away, so will the nausea. So far, everything is staying down.
Thanks for all the information and suggestions. It really does help to have such a variety of responses. Seems like everyone has been there before with a dehydrated child (except for me) so your information has been really useful to us.
Posted May 5, 2006 11:56pm
Let me preface this entry with these statements: Mason is doing good. She's happy and sleeping soundly right now. She is okay.
We just got home from the emergency room at Texas Children's Hospital. Mason has been throwing up and has refused to eat or drink much of anything all day today (just some KIX cereal and a sip of Gatorade/water). She had a wet diaper this morning when she woke up and another that was just a tiny bit wet at 10am. By 5pm this evening, no additional wet diapers, no fluid intake, and no appetite...but the little toot was happy as a lark and acting like herself. I called her pediatrician who said to take her to the ER if I was really worried. We got there around 6 and were finally discharged at 10:30pm. They gave us jello when we admitted her and she ate the jello happily. I didn't know that jello counted as a fluid...that alone was worth the trip. I've been so focused on packing in the calories that jello had never occurred to me. Around 9pm they brought in the pedialyte but she kicked the pedialyte over and off the exam table when she tried it...it's pretty nasty. She had an attitude by the time they brought it in...3 hours will do that to a girl. Anyway, no IV's and they gave her an anti-nausea medicine before they discharged her. She finally wet her diaper at 10pm so...
She never got totally dehydrated, her mouth was always wet and skin was normal but the lack of fluid intake and not wetting is what worried me. I just didn't want her to get to the point of dehydration and have severe issues.
Ashton waited patiently in the waiting room with her daddy most of the time. Thank God there's a McDonald's at the hospital! She's a little wired from a chicken nugget and ice cream high at the moment. She's asking me to tell everyone that "the doctor took care of Mason."
Anyway, all's well in the Taylor house at the moment. I'm hoping that our morning goes well and the vomiting doesn't return. Keep Mason in your prayers please!
Posted May 4, 2006 11:06am
Physical therapy this week went well. Mason showed off and pulled up to a stand with just a little butt-support. Her weight check was also positive, 14 pounds 10 ounces - so she's gained a little over an ounce this week. Any gain is good gain. She's becoming more independent too. She's trying to get her own toys and is creeping all over the house to get into things!
She went to her speech therapy this week too. The therapist who works with her, Lavonne Atkinson, is SO good. She sent us home with a neat little cup that's like a reverse sippy cup. It has 2 handles and a concave lid with little holes in it. Mason's really doing well with the cup but tends to push it away until she realizes there's milk or ice water in it.
Yesterday morning I caught her in bed studying her hands intently...when I walked in she looked up at me, smiled, and said, "momma!" I keep playing it back in my head over and over, it was so sweet the way she said it.
Posted Apr 28, 2006 11:42am
Sorry for the lack of updates but life is just hectic this time of year. I'm typing this up frantically during my lunch break...
Mason went to physical therapy at Tx Children's this past Tuesday and did good. She's not crying as much during therapy as she did at first. She still can't pull her knees/hips upder her body to do a traditional crawl but, when I support her hips, she does do the back and forth movement on her own. This is a big change from previous weeks where I was the one doing the entire motion for her. She's trying to pull up on things...more of a half kneel but sometimes she's getting to her feet. She can stand for prolonged periods of time, once she's gotten into standing. We use the "Play-doh Table" and a soft, Pooh bear armchair from Wal-Mart. When used together, the chair and table are the perfect height for her to pull up to standing from sitting and then she'll just stand there holding the table (and eating raisins off of it) for a long time. I think she's done 4 minutes on her own with the table as support.
She's drinking better from the sip-a-mug but still isn't taking in enough liquids; maybe 4 ounces a day at the most from a cup...Her doctor has asked that I continue to nurse her until her fluid intake is sufficient.
Mason enjoyed her Easter egg hunts (one with family, one in town, and one with the Down Syndrome Association)...she would grab two eggs and just bang them together happily until they broke open.
We had her weight checked on Tuesday while we were at the hospital and there's no good news to report on that end. She weighed 14 pounds 8.2 ounces and was 67 cm long...she's lost some weight but gained some length. I guess mobility really does hurt weight gain. She's now 14 months old (officially on 4/23/06)so I guess that's one pound for every month.
Posted Apr 7, 2006 1:25pm
Okay, we've been very busy these past few weeks. Mason has been swimming at the city recreation center 3-4 times a week and LOVES it. It's good for her hips/legs and great for her spirit. She lights up when we walk into the building. Ashton is no longer scared of the pool and loves it too. I found some wax plugs at Wal-Mart to put in her ears to protect her tubes. She's not too crazy about those but did enjoy going under the water, which she could never do before!
Mason started physical therapy at TCH this week. She'll go every Tuesday afternoon in addition to the ECI services she currently receives. The therapist pushes her beyond what she's used to - she started crying about 15 minutes into the session and didn't stop until the hour was over. She was exhausted. Her hips are still weak and she just can't seem to hold them under her body to crawl correctly...but she tries. We're still using the Hip Helper shorts to support those hips. The ECI PT came out to the house on Wednesday and Mason started working on pulling up to a kneel and then standing on the ottoman. She had to have raisins as a motivator.
I had her weighed and measured while we were at TCH and she was 14 pounds 12 ounces and 26.5 inches long by their scales. Improvement but still...she's very tiny.
We're going tonight to buy her Easter basket for the Down Syndrome Association of Houston egg hunt tomorrow afternoon. I'll post pictures of her first egg hunt asap.
Posted Mar 21, 2006 7:21pm
The ECI nutritionist, Anne Sink, came out today to check Mason's weight gain, length, and diet. Her measurements are a bit different from those at Texas Children's. Ms. Sink has a teenage daughter with Down Syndrome and really takes her time to get accurate measurements so...I have more faith in her info. According to today...Mason is 26.5 inches long and weighs 14 pounds 14 ounces, head circumerence is 16.5 inches.
Ashton did great in gymnastics last night. She's getting over her fear of the bars. Great Grandmother Shuman came to watch her which made Ashton very happy. We went to watch our friend Juan Carlos play t-ball tonight...when he was concentrating he was good but...they're only in kindergarten so the attention span is short. Good job Juan Carlos!
Posted Mar 20, 2006 9:54am
Sorry for the delay in posting... we were enjoying our Spring Break. I have a few minutes this morning to update you. Spring Break was busy and exciting. We went to 2 birthday parties, the zoo twice, shopped at the Galleria, went to the hospital, had speech and physical therapies, had a good visit with GiGi and Aunt April, and played at the park a lot.
MASON IS NOW INCHWORM / ARMYMAN CRAWLING EVERYWHERE!! She's mobile and loving it. She still gets into a sitting position like a contortionist (tummy flat on the floor with her legs behind her and then pulls her legs in front, without lifting her tummy off the floor, and walks her hands up to sit). She's fast too. She'll inch worm over to an object and grab it faster than you'd think possible for such a tiny girl.
She began signing "more" and "eat" this past Monday and is now working on "bath" and "drink." She gets really excited when food is in front of her and will point to the palm of her hand (a modified "more"). Her private speech therapist and ECI physical therapist were just thrilled at these new developments. She'll be 13 months old this Thursday and is doing so much more than she was even 2-3 weeks ago!
We went to Texas Children's on Friday for a gastroenterology appointment with Dr. Krishna (shortened from Gopalakrishna). She weighs 14.33 pounds (6.515 Kg)and is 25.98 inches (66 cm)long, by their measurements. It seems her height is never consistent from one doctor to another...Anyway, she's made a 13.5% gain in weight since he saw her 3 months ago! Last time she weighed 5.74 Kg so she's gained .77 Kg!! Her BMI is 14.96. This is all very encouraging. She's still on the Duocal weight gainer and having to take Miralax b/c it constipates her. Dr. Krishna suggested upping the Duocal from 4 to 5 tablespoons a day and continuing with what we're doing dietwise. Mason has recently learned about the joys of eating raisins, pasta with basil pesto cream sauce, ham salad sandwiches, quiche, omelets, sushi (she loves California rolls (crab, cucumber, and avocado), avocado rolls, and cucumber rolls - no raw fish, don't worry!), queso, taco meat, tortilla soup, grapes that are cut into 1/4, and a few other things I can't think of right now. She's a great eater and eats constantly. Apparently she just has a really high metabolism.
Posted Mar 6, 2006 12:44pm
Mason had a physical therapy evaluation at Texas Children's Hospital on Friday. It went well overall. They are taping her abdominal muscles and her calf muscles to promote proper usage and help with tone. This whole taping approach - Physio taping or Kinesio Taping - is really exciting! It's like havin a mini-physical therapist there all the time stimulating her muscles and reminding her to use them. When they taped her legs, she immediately stopped rolling her ankles inward and/or upward. She has full range of movement but now won't hyperextend her ankles up toward her shin. Vicki Walston, the PT in Alvin ISD where I work, said that while the patient CAN move their muscles/limbs however they want, the tape makes it more comfortable to hold that limb/muscle in a different, better position. They use taping for all types of muscular issues in adults and children...and tapingback spasms, cramps, posturing, you name it. Look into it online if you have the chance.
The BACH (ECI) Roll and Stroll was Saturday and Mason participated (she even got a trophy!). There were many kids there that were much worse off than my Mason and who are in need of prayers. Please keep all those little birth to three year olds on your prayer list.
To make a long story really, REALLY short (since this is Mason's page and not mine)...my mom, cousin Lauri, friend Lori, husband Corey and other friends/family threw me a surprise birthday party for my 30th on Saturday! My family and friends all drove to Houston and surprised me. We had about 50 people from Dallas, Austin, Grapeland, and the Houston area there. It was wonderful. The girls were wonderful and enjoyed seeing everyone(so did I) until the party died down around 11pm. Thank you to those of you who came down to celebrate this milestone with me!! It was REALLY cool that everyone took time out of their own busy schedules for this.
Mason has an appointment this month with gastroenterology to discuss weight gain. Her thyroid tests came back with her levels well within normal limits and no indictors or early warning signs of leukemia (increased risk in children with Down Syndrome). They will continue to watch these over the years to make sure all is well.
Posted Mar 2, 2006 10:17pm
Mason's getting 2 teeth!!! They broke through today. I joked with my friend Mari, who kept her today, that Mason had to get teeth to protect herself. Mari has 3 boys (5,3,2) and a daughter (9 mts). Mason just needed protection. All kidding aside, the kids were great with her and love her to death but...can you believe it?! Teeth...not one tooth but 2! It's the 2 middle bottom teeth.
Sorry it took so long to update the page but we've had a busy week. Mason's party on Saturday went well. The kids decorated cupcakes and played indoors due to the rain. I think everyone enjoyed themselves though. Mason loved opening her presents...she loved the tissue paper more than the actual gifts but...that's what I expected. The cake was fun for her too...it took about 30 minutes of eating before she was tired of it.
Monday she was evaluated by the ECI speech therapist, Jan Baldwin. She qualifies for services and will be seen once each month. They're willing to provide it every 2 weeks but right now I feel like I have a good grasp on what to do with her. We're so busy with gymnastics, other therapies and doctor appts, Down Syndrome Association meetings, and just enjoying ourselves that I wasn't feeling the need to add another "must do" to our week.
We have to be at Texas Children's at 8am Friday for another appointment. This is a physical therapy evaluation. She's receiving PT through ECI but I've heard good things about the therapist at TCH so...insurance is paying, the recommendation was made, and we're going. I'm hoping they can give us some more ideas to get her crawling. She wears her hip helpers (www.hiphelpers.com) to support her hips and hold her legs together when bearing weight in the crawling position but...she's still VERY low tone and loose in her hips.
I still need to post her cake eating pictures but have to get the girls in bed, it's after 10 already. I'll do my best to get them up tomorrow.
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