Posted Feb 23, 2006 6:57pm
Mason's 1!! She had her well-baby check up today. She's a heavyweight...weighing in at 14 pounds, 5 ounces (with a wet diaper)!! She's 25.75 inches long and her head is 16.5 inches in circumference. Dr. Isenhower said her weight for length ratio is between the 10th-25th percentile, so she's in proportion.
She showed off today and tried to wiggle off the exam table, spun around in a complete circle on her rear, and didn't even cry when she got her shots. She looked at the nurse, in complete disgust with her bottom lip sticking out, and just let out a short yell. They drew blood at the lab to check her thyroid levels and, once again, just a yell at the phlebotomist and stuck out her lip...she's so mellow.
We had her one year portraits taken today at The Picture People and they are adorable. My mom is scanning them tomorrow and I'll post them once I get them. Breaking copyright laws but...it's cheaper. She had 18 shots taken and 15 of them were cute...we only bought 5 though - she's like Ashton, very photogenic. I'll post pics of her eating her cake on Saturday after her party. Gotta get back to cleaning the house...it's the first time most people are seeing the new house so...lots of work to do.
Thanks for praying and caring about her this first year...let's make the next year even better!!
Posted Feb 22, 2006 12:33pm
Mason had her annual review with BACH ECI yesterday - her physical and occupational therapists do the evaluation. She did very well overall and they were impressed with her progress. They have seen her since she was itty bitty and were pleased with what she had accomplished this year. She entered the program at 2 weeks old because I hassled them so much from the moment we came home from the hospital.
Anyway, as we already know, her gross motor skills are the most delayed (7-8 month level with some scatter higher)- to be expected with her tiny stature and low muscle tone. Her fine motor was solid at a 8-9 month old level but scattered up to 12 months, adaptive functioning (feeding etc) was about the same, communication was about 9-10 month old level and scattered to 12 months (she's very verbal and makes lots of sounds). Her social skills are age appropriate - I figure this can take her far in life, even if her cognitive skills aren't right on level. Her cognitive skills are about 8-9month level with scattered skills up to 12 months. It's hard to assess her b/c of her lack of mobility. She can roll everywhere but can't get herself into a seated position so some skills she just isn't able to show as easily as a typical baby. She doesn't get up and walk or crawl to her toys to pick out her favorite but...when they are within rolling distance, she'll roll to it and get it - so she only gets partial credit on test measures.
Overall, they didn't tell me anything I didn't already know but it was nice to see that they were happy with how far she has come. Leighane, the nanny, asked the OT and PT about other children with Down Syndrome that they work with and how Mason compared - mostly in size and communication. Leighane is just as concerned as I am about how tiny Mason is but is pretty impressed with her communication abilities. Both women noted that Mason is more verbal than most that they see but is MUCH tinier than any of the others. I appreciate their candidness with me. Mom did point out to me that height does not exactly run in the family. My MaMa Gayle was tiny and her siblings are tiny - all right at or around 5 feet tall so...Mason just has a double whammy in that area.
I'm seeing huge gains in her communication and gross motor skills since she had the PE tubes placed in her ears last month. I think her balance was thrown off, in addition to low tone, and that's why gross motor is so delayed...I'm hoping to see even more progress in the mext 6 months. I'm so proud of Mason and what she's done. I never expected that she'd have accomplished so much in this first year. She's such a little inspiration!!
Her 1st birthday is Thursday the 23rd!! It's crazy how the time flies.
Oh, before I forget, the breathing treatments have worked well and she hasn't required one since this weekend. She's all clear and healthy.
Posted Feb 15, 2006 12:20pm
Okay, so the update is late....sorry. Mason's doing great. She's still congested but much better. If Mother Nature would make up her mind and keep the temperature steady, I think Mason's sinuses would calm down. For those of you who do not live in Texas, it was cold (30 degrees) this weekend, cool (still cold to me but probably 40-60s)Mon/Tues, and now today is BEAUTIFUL but cloudy...no jacket required. It's crazy.
She's now getting 2-3 breathing treatments a day depending on symptoms. This morning she just sat in my lap and watched Dora with Ashton while I held the little mask on her face...never even flinched or whined. I'm so lucky to have such a sweet-tempered baby. We took some really cute Valentine's Day pictures last night that I will post later. Ashton's doing good too. She did great in gymnastics this week and was, by another parent's report, well-behaved during her Valentine party yesterday.
Posted Feb 9, 2006 11:03pm
We had an unexpected and rather scary doctor's visit today. Last night just before bedtime, Mason started coughing very loudly, gagged herself coughing, and threw up her dinner all over Corey. Her cough sounded AWFUL - close to a bark. We pumped her full of Triaminic and gave her a mild antibiotic to fend off a sinus infection. She slept in bed with me for awhile and Corey moved her to her bed later. All night she seemed fine. She didn't even sound too congested (for her). However, this morning (Thursday) she was coughing again and it sounded even worse.
I was able to get her an 11am appointment with her pediatrician. The doctor could hear wheezing/rattling her in chest and she did her little barking cough again a few times so they did a strep culture (negative). She had to do a breathing treatment which was interesting...she tugged at the face mask the whole time and cried. They've sent us home with our very own nebulizer and 180 dose pack of Albuterol. (Insert sarcasm here)I think every house should have a nebulizer...they're loud, obnoxious, and capable of making a baby cry just by looking at them...it's GREAT!! Her little face mask is cute though. It's a purple dinosaur - complete with horns - she goes crosseyed when she's getting a treatment! We have to do them morning and night through the weekend and may need to add a mid-day treatment if she doesn't show enough improvement. I'm sure she'll do fine though. She's back on Zithromax to fight off RSV and pneumonia - she's already had pneumonia once and we don't want to take any chances. They weighed her today and she was 14 pounds 2 ounces. She's lost a little weight but it didn't alarm anyone but me. I'm looking at her right now, sitting with her hands on her knees watching Iron Chef intently, and can see a huge difference already in how she's feeling. She's a little "wired" from the Albuterol treatment - she keeps bobbing her upper body and bouncing around. It's like she has eaten a whole bowl of sugar.
Thank you to my friends at Alvin Primary and Passmore who covered my ARD meetings on short notice. Thank you to all of you out there who pray for my girls, love my Mason for who she is & who always seem to have time to listen to me and my worries. Thanks to my husband's boss and coworkers for letting him come home early today and help me.
Take care everyone and I'll post an update later this weekend to let you know how she's progressing...we don't anticipate any problems.
Posted Feb 3, 2006 9:32am
Mason's doing great. She's feeding herself really well with her fingers and trying to grab the spoon. She's starting to tolerate the crawling position better and actually held herself up on hands and knees for 3+ minutes this past Wednesday. Her hair is getting so long that she and Ashton share hair clips. The infant clips are too small for Mason now. She's saying "mama" more and more. Her newest thing is waking up in the morning and blowing raspberries until someone gets her out of her bed. This morning it was raspberries followed by "dada" over and over...she already knows which one of us will cave in quicker!
It's hard to believe that her 1st birthday is less than 3 weeks away! I have to make the birthday invitations this weekend...time to pull out the pictures...I'm making a collage invitation like I've done for Ashton's birthdays. We're working on the house to get it presentable for family and friends on party day. I'll post more pictures soon.
Posted Jan 24, 2006 2:25pm
We followed up with the ENT today. Mason's tubes are looking good, they're not blocked, and her ears are clear. This was the first visit she's had where they didn't have to suction her ears. The doctor is scheduling another hearing test for her in the next month or 2 to follow up. We're still waiting on all the paperwork from the hospital to get Deaf Education services started up for her. They say it'll be a monitor basis b/c her hearing loss will fluctuate over time as fluid accumulates and drains.
Big Sister Ashton's hearing test was flawless...apparently she just doesn't listen to me. All this time I thought she might have had a slight hearing loss b/c of her history of ear infections and it was just toddler-selective hearing! Ashton's tonsils are enlarged but we have to visit the allergist first before they make any decisions about removing them. Apparently tonsil size ranges from 1 to 4+ and her's are a 3+ so they're big but possibly treated with Nasonex and meds.
Mason's back at her Nanny Leighane's today...I think she missed her friend Elizabeth - they were smiling at each other this morning and Elizabeth gave her a big hug.
Posted Jan 21, 2006 3:10pm
Well, it's been a busy week. Mason had physical therapy and nutrition appointments with ECI this week and Ashton started gymnastics. Mason's Physical Therapist, Beth Childers, has recommended that her PT be bumped from 1 hour/month to 1 hour 1 time/week. She recommended this because Mason is now more capable of doing gross motor tasks (crawling, pulling up, walking) but is not doing them on her own. She can sit upright unassisted but cannot get herself into the seated position on her own (I have to place her upright on her bottom). Also, she cannot get onto her belly with any type of graceful movement that resembles a "typical" baby. She is not crawling but will propel herself forward toward an object much like a frog (shoots her legs out behind her and flops on her belly), usually hitting her head on the desired object! With all this in mind, the additional physical therapy is greatly appreciated by me. She's falling a bit more behind in her gross motor skills but her fine motor and speech are great. She has a neat pincer grasp (thumb & index finger) with her right hand and a more sloppy three fingered version with her left. She can rake small items toward her body and then neatly pick them up and place them in her mouth. These items are usually parent-approved items (bites of food etc) but sometimes pieces of fuzz find their way to her mouth as well. She is babbling more and more each day. Mason is also able to do her own "ah-wah-wah-wah" sound by flapping her hand to her mouth - it's pretty cute to watch her!! She's doing it right now in fact and saying "dada" at the same time. The little toot can say "mama" but she doesn't choose to do it often enough in my opinion.
Her nutrition appointment was Friday afternoon and we received GREAT news...she weighed 14 pounds 7 ounces, was 26 inches long, and her head was 16 1/4 inches in circumference!! She's still miles off the "typical" chart but doing great when you look at her personal growth. She's eating more table foods, despite her toothless mouth. She's recently tried ham salad, navy bean soup, pimento cheese spread, raspberries, strings of pork chop meat, stew, steamed broccoli, cauliflower and cheese, sauteed squash with yellow bell pepper and onions (loved those), and refried beans. She has yet to meet a food she didn't like.
She spent Thursday and Friday with her Great Grandmother and Granddaddy Shuman while I was at work b/c her nanny Leighane and her daughter, Elizabeth, have the flu. So far Mason is flu free...in fact...she hasn't been sick in over 2 months! No congestion or anything which is a huge deal for her. She continues to be the poster child for Trisomy 21 / Down Syndrome, she is just amazing!
Ashton is enrolled in gymnastics in Lake Jackson at All American and is loving it. She had her first class this week and will be attending Mondays from 5:15-6:15pm if any family and friends want to come watch her light up the gym.
We follow up with the ENT this Tuesday to check on Mason's tubes and do Ashton's hearing test. I don't anticipate any problems but will post a message when the appointment is over. Take care and God bless!
Posted Jan 12, 2006 1:09pm
Mason's balance is really improving. She will now sit and reach for an object that is very far away...actually touching her tummy to the floor stretching for it. Gotta love the flexibility of a child with Down Syndrome! She then somehow manages to get back upright without help. The other day she stretched out with her tummy flat to the floor and then managed to swing her legs out behind her (looked like a contortionist in a circus act) and tried to scoot toward her toy. Her butt was high in the air and she was pushing with her toes. I think scooting and/or crawling is just around the corner. I was hoping she'd be crawling by her birthday and now it doesn't look like an impossible dream! She's also just discovered her balance in the bathtub too and was kicking,splashing, and squealing loudly last night during bathtime. I love seeing her little personality evolve!
We have a Down Syndrome Association of Houston meeting tonight. Best Buddies of Texas and SIRE (horseback riding/equine therapy) are speaking. Visit www.dsah.net for information about meetings and events. It's a great organization.
Posted Jan 7, 2006 9:55pm
Mason is a new kid with these tubes in her ears! She's startling at almost every sound now. Yesterday she grabbed her favorite rattle and shook it...when it made a sound she nearly jumped out of her skin. It kind of took my breath away to realize that for the past months she never knew it made a noise. This is happening with almost every toy and noise in our house. Her nanny, Leighane, has a little 18 month old, Elizabeth, who's become very good at scaring Mason. She walks up behind her and says, very loudly, "Hi baby!" Gets her every time...pretty funny if you ask me.
Dr. Krishna, the Gastroenterologist, called Thursday to tell me he was happy with Mason's weight gain over Christmas. I had to call in her weight every week and she's up to 13 lbs , 3 oz as of 1/4/06. She had put on a pound since December 19th so he wasn't recommending any additional tests at this point. She's still on her weight gainer which is causing some diaper/constipation issues but it's a small price to pay. She's going to be so embarassed when she grows up and finds out I told everyone she was slightly constipated!
Posted Jan 4, 2006 11:45pm
I have decided to post the email I sent out to family on Dec. 20, 2005. This email had details about Mason's most recent echocardiogram and gastroenterology information as well as original hearing test information. Some of you have already read it but others have not.
Date: Tue, 20 Dec 2005 17:47:35 Mason will be 10 months old this Friday! Mason had her follow-up echo-cardiogram done on the 7th of this month (Dec)and we met with the Cardiologist on the 14th to review the results. We went to her Gastroenterologist on Monday, and also had her hearing tested (ABER- brain stem response). She went to the ENT today for follow up on her test yesterday. Here are the findings: Echo/Cardiologist - 4 holes were seen this visit (5 previously); Cardiologist said the 5th hole may have closed up or was just difficult to see b/c it's in the back of the heart. She noted that Mason had lines on her heart in all her chest x-rays (done at 4, 6, 9 months) and said that they could be due to virus/sinus issues but wants me to bring her in for another x-ray when she's not congested/sick for a "healthy look." If the lines are still there, then she will refer her to a pulmonologist b/c there could be some greater issues with her lungs/heart failure; she is still unmedicated for her heart which is a good thing Gastroenterologist - poor weight gain (12 pounds 6 ounces) but she looks good, she's not emaciated; he recommended that we try to add another jar of baby food to her day (4 jars total) and continue with the weight gainer (1 >tablespoon per jar = extra 42 calories); she loves guacamole, fresh avocado, broccoli cheese soup, potato soup, marinara sauce in addition to baby foods so her diet is varied. Just to give you a rough idea – her same age peers are usually at least 16.5 pounds. Hearing/ABER - Mason was asleep for this test and they almost completed it before she woke up. Mason has a moderate hearing loss bilaterally (both ears); 50 dB loss in her right and 60 dB in her left or vice versa I can't remember. She had a Type B tympanogram bilaterally, which means that there's no movement in either eardrum when a puff of air was blown into her ear. She has fluid behind her eardrum (it's clear, not infected); she's never had an ear infection. Bone conduction testing was partially completed (right ear only) before she woke up. This showed a 40 dB loss which led the audiologist to believe that the fluid in her middle ear was causing a lot of the problem. What this all means is that she will need to have PE tubes placed and possibly hearing aids. When she told me that I hopped on it and got her scheduled with an ENT for them to order the hearing aid fitting. The ENT at Children's Hospital was scheduled for 1/5/06 but I found another one that squeezed her in today: see below ENT (Ear, nose and throat specialist) - Mason saw Dr. Adkins, who ordered the original hearing test back in October at her first visit.
After that October visit this doctor had recommended that I follow up with a different ENT if I wanted to pursue removing her tonsils/adenoids (they are enlarged and make it difficult for her to breath sometimes). She isn't comfortable operating on Mason's tonsils due to her heart condition and small size. She worried that b/c eating is so difficult after the procedure, Mason might lose weight which she can't afford to do. Anyway, I called her when I left the ABER this past Monday and was telling her what they had said. She told me that she was totally comfortable doing the tubes in her ears but had just had reservations about the other surgery. She squeezed her in today and had the ABER preliminary results faxed from the hospital. She told me that she will put tubes in Mason's ears (scheduled for January 4th at Tx. Children's Hospital) but that the tubes alone will probably not completely correct the issue. She said, depending on post-operative ABER results, she will order her to be fitted for hearing aides. Dr. Adkins said that it is possible that the tubes will correct the loss but she just felt like those odds were slim and that Mason would still have a mild loss after surgery. I told her that I want Mason to hear her very best and would prefer hearing aides if it would bring her hearing to a more typical level.Mason will also be referred for early childhood deaf-ed programming which will provide her even more support!! This is going to be very helpful to her.
Posted Jan 4, 2006 9:07pm
Sorry for the late post but I just woke up from my nap. Well, the surgery is over and all appears well. We got to the hospital at 6am today and left at 1:45pm. Mason was a real trooper. Dr. Adkins said it was the "most difficult surgery" she had ever performed and it took over 1.5 hours to place the tubes. Apparently Mason's ear canals are even more narrow than she thought. They had to use the equipment they use on premies to even access her ear drum. She has a long-term tube in her left ear and a shorter-term tube in her right b/c it's more narrow. Dr. Adkins said that Mason had "severe glue ear." She told me that she was expecting to see some clear fluid drain but instead she saw tons of a gluish, very thick suspension drain in both ears. She had to manually drain both ears with syringes and gave me drops to use at home for the next 10 days to soften the stuff and help with drainage. At the time that she was reviewing this with me she said that should really impact Mason's hearing test results b/c this type of stoppage is so thick it significantly impacts hearing. They did another hearing test after surgery and we got GREAT news. Her hearing went from a 50dB loss in her right ear to a normal reading (she can hear at 20 dB) and from a 60dB loss in her left ear to mild loss (can hear at 30dB). The audiologist said she was not recommending hearing aids at this time!! I just cried and cried. We needed this good news. It seems like it's been a while since any health related tests have given us really good news like this. Thanks for all the prayers!
Posted Jan 3, 2006 11:02pm
I've decided to use this website as a means of updating family on Mason's progress. I will post medical, developmental, and general information about her here. A good friend of mine used this with her little boy and advised me that it takes a lot of the stress out of emails and updates. The first tidbit of information is that Mason has her PE tube surgery in the morning at 7:50am. The surgery itself is not a big deal, it's the sedation that everyone is worried about because of her heart. I will update this as soon as it's done to let everyone know how she did. They are going to try to redo her hearing test immediately after surgery to help us decide about hearing aides. She's doing great and went to bed about an hour ago...now it's my turn. We'll be hitting the road early in the morning (5am) so we can meet with anesthesia personnel and cardiology prior to surgery. Quick prayer please!
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