Tuesday, October 28, 2008

Preemie Follow-Up and The Zoo

Maryam had a preemie follow-up appointment today.....and we have nothing but GOOD news! Hooray! First we were seen by the High Risk Clinic Occupational Therapist. She had Maryam color with a crayon, play with the shape sorter, sit in a chair at a table, go up and down stairs, run, walk, put blocks in a tray and stack blocks. Maryam did everything that she was supposed to do! She tested at 18 months and managed to accomplish every task! I know what you're thinking, Maryam is nearly 22.5 months old....and 19 months adjusted and you're right! BUT, this is the smallest gap Maryam has ever had between where she tests developmentally and where she is in both adjusted and chronological age. w00t!
After she saw the OT, Dr. Bromberger (The Saint) came to have a look. Maryam is in the 85% for weight and 55% for height for her ACTUAL age! Hooray! That means no more adjusting for her prematurity for her physical size! Hooray again! We'll be down to only one growth chart! I'm so excited and this is just the beginning!
After that WONDERFUL news we got the next bit. Dr. Bromberger no longer sees any signs or symptoms of CP! Once Maryam started walking and running, her gross motor skills were virtually caught up to her adjusted age. The fact that she can walk and run unassisted pushed her over the last hurdle we were facing that may have given cause for a CP diagnosis. Maryam still has low muscle tone in her hips and shoulders, but according to Dr. Bromberger a few excercises can help with that. Which brings me to our next great news..... Maryam will only have to go to PT once a month for monitoring! No more once or twice a week, just once a month. Woo-Hoo!
On to her feeding issues. Because of Maryam's "exponential weight gain in the past year" we're going to try to cut back on one of her bolis feeds to see if it doesn't get her to eat more. I was telling Dr. Bromberger about Maryam's "Happy Hour" (the hour before Maryam is due for her next bolis feed) and she thought that by giving her less formula at lunch, she might eat more at dinner. I TOTALLY agree. Maryam does her best eating at dinner. She's not doing enough swallowing to actually cut an entire bolis out, but we're going to bring it down from 10 ozs to 6. Then if it works and she starts eating more solid foods, then we can lower it to 4 ozs. Wish us luck.
Now for the SUPER FANTASTIC feeding news...yep, there's more! Dr. Bromberger is going to write a referral for the Intensive Feeding Clinic at CHOC! Hooray! That was one of the feeding programs I've been researching to find out if SoCal Kaiser would cover it. According to the doctor, she knows that she has sent one patient there and Kaiser covered it AND it was very successful. The great part is its only one week and its in-patient so we wouldn't have to worry about hotel costs. Not that we'd have to worry too much, we have friends and family with more than enough room and would be more than willing to let us stay if it helped Maryam learn to eat! The other option is in VA. Which is the first clinic I found out about and have read nothing but awesome results about. The doctor said that she has had 4 or 5 patients go there that Kaiser has covered and had WONDERFUL success. That program is 2 weeks long and is out-patient. In that case, we'd have to pay to get all the way to VA and then find a place to stay. Assuming its near one of Brett's relatives we'd be fine, if it weren't we'd have to have a car wash to raise money for hotel costs. (J/K about the car wash thing)
Anyway, Dr. Bromberger thinks that Maryam is finally ready for intensive therapy AND said she knows how to write the kind of letter to make sure it gets approved by Kaiser. w00t! I almost cried as the words came out of her mouth. IF we can get Maryam into a clinic and eating orally....I can't even begin to explain how much our lives would change. I get all teary just trying to type the words....so I shall move on...you all get what I'm saying.
Winter Quarantine, the dreaded lock-down, we got some more information on what Maryam's limitations are. Maryam can go out into the open air (Zoo, Sea World, Disneyland IF its not crowded....um, when does that happen?), which we found out on Saturday, but she elaborated on other things she can do. If we need to take her with us to the store, we can! Hooray! Last year we wouldn't have dreamed of it. But the doctor said that if we wipe the shopping cart down, or use a cart cover or better yet, keep Maryam in her own stroller that we can limit her exposure to germs. We knew that part, but its nice to hear that we're actually "allowed" to! By the end of March Maryam will be "allowed" to play with school aged children again, assuming she doesn't get pneumonia or RSV during the winter. IF she does get sick, we might have to wait until April. But assuming all goes well, Dr. Bromberger thinks it would be a good idea to enroll Maryam in a pre-school or toddler school environment a few days a week for a half a day. This will help her with her social skills (which she doesn't really need help with according to Dr. Bromberger) and her language development.
On to language, Maryam is going to need to start Speech Therapy when she turns 2 years old. We saw this coming her whole life. We've always been told that babies who have a hard time eating, have a hard time articulating....SURPRISE! We use the same muscles to speak as we do to eat.
We talked about Maryam's oxygen and how she just started walking after we disconnected her from her "leash." I told her about how Maryam required oxygen at higher altitudes and she wasn't at all surprised. We all agreed it would be best to keep the oxygen in the house through the winter in case she does get pneumonia or RSV. If she were to get either of those she would require oxygen FOR SURE. But she did say her lungs sound crystal clear! HOORAY!
So, that's all of my wonderful news!!!! HOORAY!

BEFORE Maryam's appointment today, Brett and I thought it would be fun to take Maryam to the zoo to see real monkeys. We weren't wrong, she went bananas! She thought the monkeys, apes, gorillas and orangutans were hysterical. By the time we left the zoo she was doing her impression of monkeys. She even tried to jump! It was pretty funny. The slide show above is of Maryam at the zoo. Most of the pictures...maybe 22 of them are pictures that Brett took of Maryam eating his ice cream cone. She didn't want mine for some reason....good baby!

One more thing to add, sorry that this post is so long, but I had a lot of things to say! I originally started this blog in July 2007 when we found out that Maryam was going to have yet another surgery. I started it a few days before she had the fundoplication and G-tube placement. I did it for our family and friends to be able to hear about her progress without me having to sit down at the computer and respond to upwards of 20 emails or call 15 people with test results or updates. Since then, more reasons for updating her blog have emerged. One reason in particular was completely and totally unexpected....other preemie parents. In the past year I've received over a half a dozen emails and countless blog comments from total strangers all thanking me for Maryam's Blog. I'm grateful to have been given the opportunity to raise such a wonderful little girl, and part of me feels like I have angels helping me. Its nice to know that other preemie parents are finding Maryam's journey helpful to them. And that in some way this blog can be a little angel on their shoulder helping them through their ups and downs.
So AGAIN, thank you to all of our readers, old ones and new ones. Your prayers and well wishes aren't going unheard. They've gotten Maryam this far and they're helping other little preemie babies now too.


Anonymous said...

What wonderful news you heard! I am so happy for you guys! Keep posting cause we love all the updates & news!

1 Crafty Gal said...

This is such great news!!! Congrats!!!!


Katie said...

Yay Maryam!!!!

Christi said...

Nicely put ;)