2012 -2013

I never have time to blog so I'm hoping I will make time in 2013.  2012 was good and each year as Maddie gets older and I adjust to her, it seems to get better.  There are still some challenges that present themselves, Maddie is more prone to getting sick, her speech, and her feeding issues.  The progress she made in 2012 was more than we could hope for, she started walking and can almost run!  She can definitely understand most of what we say and I read to her as much as she will let me so introduce new words and keep her engaged.  She has also expanded her vocabulary and just this morning was saying E-E-E-E and so I played the guessing game to try to figure out what she wanted.  She wanted to eat!!! And when I asked her if that's what she wanted, she nodded her head yes!  That is also a very recent addition, before she would only shake her head in the negative and no acknowledgement of a positive.

The things that still concern me are that she requires soft or semi-soft foods because she doesn't chew her foods properly.  That has been her feeding therapy focus.  I worry that daycare won't follow that and she could choke.   She also will need eye surgery this year as her eyes still don't track.  I guess that is not too bad, but when I look at her counterparts, it's painfully obvious how far behind she is.  We have held her back 1 year in daycare for her safety and so she can learn at a rate appropriate for her.  In august, she moved to the 1 year old class, she should be in the 2 year old class.  She's doing very well and even the teachers have mentioned she would be good in the 2 year old class.  I really noticed the difference at the school Christmas performance where the 2 year olds were singing a song and Maddie tried to and clapped at all the right parts!

This year she is supposed to start the transition to the public school system for EI.  I don't have high expectations based on stories I've heard and how disfunctional the normal school system is where we live.  But my coworker said once her son started, the progress he made was huge! So I am hopeful that having her in a program that is specialized for her with experts trained to deal with her will be positive.

The other challenge is her older sister who is 4 and is controlling and slightly defiant.  Everytime I tell someone about her, the instant response is she must take after her mother!!! That makes me feel like I'm OCD, controlling, and a micromanager...which couldn't be more opposite! I am usually right, just want my employees to get their work done timely, and check in on them about once a week.....Maybe I can be more OCD and I'd have a cleaner house, be in shape, and get another degree!!
That makes for a fun time!  At least Maddie doesn't put up with her antics.

Here's to progress in 2013!

Been Busy

The last few months we've been busy, just living and enjoying the summer!  Since Maddie got tubes, she's been progressing leaps and bounds.  She's walking like a champ, she's babbling and saying more and more words and I know she's so smart and understands us even if she can't always communicate with us.

Since around February, she has started to have terrible fits.  If she was upset or didn't want to stop something, for example to leave, she would scream, throw her head down, and if I was holding her, scratch my face, rip my glasses off, or flair and kick.  It's progressed as she's gotten older and she never really did it at school.  My MIL has been her for a few weeks working with her so she's been the primary caregiver and Maddie has started doing the same.  I think it's because she is almost 2 and also has a difficult time expressing her self.  Her PT thinks it's because in some instances she's being challenged.  I was trying to think back about her sister at this age and she definitely had her moments and she still will assult me, kicking, biting, scratching when something doesn't go her way.

Maddie has pectus and I didn't think it was too bad, but we got an evaluation from a Pectus surgeon this week who stated that it was severe and she would most likely need surgery when she's around 10.  In my mind, I thought that since she wasn't experiencing any respiratory or cardiac issues, we wouldn't do it for aesthetic purposes.  However, since doing some more research, it won't matter we will need to do this as she gets older it will become more extreme.  I also had envisioned the bar to be a small, 2-3 inch bar, but I was shocked when I saw it.  It's about 6-8 inches and will go under the entire sternum stretching across the entire ribcage!  At least we don't have to do anything immediately.

She is scheduled for a 3 day EEG at home which I'm not looking forward to.  We were unable to capture any of her 'tics' during the 6 hour one so we get to do this again.  The most difficult part is getting the nodes on and she has to be sedated.  At least we know now that she needs the full dose.

The other thing we had to do was get an ultrasound of her kidneys, bladder, spleen and that general area.  It was something I needed to check off my list, but hadn't gotten around to it.  There was no concern but one of the first things I noticed was her right ear was a little bit smaller than the left when she was an infant. Our ped said that the kidneys develop the same time as her ears so we need to get it checked out.  She never had any issues that would indicate that there was a problem, but in June her urine started to smell so I suspected a UTI and it was positive.  We figured it was a good time to do this and the results were normal - yay!

Yay for being healthy and making progress!

Updates...it's been a long time!

So since Maddie has pulled up, she's been cruising all over the place, I feel that she'll be walking by her 2 year birthday!! She's also able to understand simple commands: bang, splash, hit, stop, no, Maddie, roll-it, high five, raise your hands, roll the ball, and point to her nose/head/tummy when asked where they are. She can sign her version of all done, and wave hi/bye. We are starting to introduce american sign language (AML) to her as it's slightly different from baby sign language and much more comprehensive. Even her teachers work with the class to learn AML, which is so helpful and supportive.

In January Maddie had 2 ear infections which brings her to +7 in the past year, I don't have the exact number. It took a month to see the ENT, and then it's another 3 months before they can perform her tubes surgery so hopefully there will be a cancellation and no ear infections! That surgery is scheduled for April.

Also due to switching to Matt's insurance, Maddie can get physical therapy weekly and she's also started speech and feeding therapy weekly, however the recommendation is for it to be 2 x's a week. We have to appeal with HR to cover 104 sessions for 26 weeks, but most likely it will be 208 for the year, hopefully they will accept that request. I mean, she doesn't speak and only verbalizes ma-ma, da-da, ha, ga, and la but indiscriminately. At least we started with the sign language early and have a way for her to communicate with us, so I feel this is quite important.

We have also been approved to visit a developmental pediatrician at Kennedy Krieger Institute which is a comprehensive hospital that has various multi-diciplinary programs to evaluate and treat the child as an individual, not just the separate conditions that are present. They have a short term intensive physical therapy program that I'd like to pursue, but we'll see what the doctor says. If anything, he will confirm that we are doing everything we can for her. I have a number of questions, but my main concern is that we aren't as aggressive with her in terms of therapy.

Originally our appointment was scheduled for June, but I called the office and she moved it to March, thanks Chanelle!!! So we will be in Baltimore for 2 days and will see the developmental pediatrician who has extensive experience working with disabled children and developmentally disabled and children with genetic issues. We also are going to see one of their physical therapists for an evaluation. It will be interesting to see what they say.

Finally, Maddie's eyes are good more than 50% of the time and with patching and growth may become stronger, so our optometrist doesn't want to perform surgery which could impact the progress that has already been done. So we will continue to have checkups and at age 3 evaluate the need for surgery, which she anticipates. So that's only next year, which I can't believe!

One more thing, Maddie definitely has an opinion. She will let you know when she's unhappy which typically consists of rolling-it (her sign for all done), high screeching, and the latest is clawing at my face and pulling my hair. I try to move out of her way, but when she first started it I didn't expect it so came to work with scratches on my face!! I'm not sure my co-workers believed my story! =)

That's all for now, when Maddie doesn't have a cold or ear infection, she makes great progress. Those really slow down her progress. We also got a handi-capped parking permit for Maddie, it's not always easy to carry a 30 lb child and all her stuff so this has come in handy and if the government won't/can't help us, at least we can get a good parking spot!!!

New Year

Maddie had a runny nose and ear infection on 12/22 and was on antibiotics for 10 days. She was basically drip free for 10 days and now is a mucus machine! Poor thing just can't get a break, her 18 month visit is next monday and I hope we won't have to go to the dr before that.

On another note, I learned of a non-profit in the county that Maddie attends pre-school in, which is different than the county we live in and use for early intervention. This non-profit focuses on teaching the day care teachers things to do with Maddie to supplement her other therapies. They will also work with the other children in her class. I'm excited about this b/c physical therapy every other week and speech and feeding weekly aren't enough. I'm also annoyed that my early intervention coordinator didn't mention this to me and when I asked, she said she used to work for them! This non-profit really seems to get it and I asked them to let me know if they think of anything we can do that might benefit Maddie and they said they would.

The non-profit is called smart start, however the way the funds are used differ in every county. In Raleigh or Wake county, the focus is on low income which if only one of us worked, we still wouldn't be eligible.

Pics of Maddie!

Since a lot of posts are reposts from my family blog, I thought it would be helpful to see my precious baby girl!!

Maddies 1 year Dr Apt!

This is a post from my family blog August 1, 2011:

Maddie's stats for her first year dr visit:

height - 50% can't remember the exact number, I'll have to look it up

weight - 21.5 lbs 50%

head - 95%, but we knew that and her growth is consistent which is good

The dr is pleased with the progress she's making and is going to monitor her pulminary, yay one specialist out of the way! Plus neuro and genetics are off my list! We will get her kidney ultrasound scan some time in January. This is just to rule out kidney issues b/c they develop at the same time as the ears and since one of Maddie's ears is a bit smaller, they want to be thorough.

Also, she passed her hearing test so I was happy about that.

Also, I was just thinking about her blocked tear duct and I don't think it's blocked so that is good! She's been doing patch therapy which has given great results, however the left eye still is not as strong. We go back in a couple of weeks to see what the dr recommends, most likely she'll have surgery. This will probably be done in January as well. (new flex spending account!)

One other thing if I haven't already mentioned it, she was approved to be placed on a waiting list of over 1000 individuals for the Medicaid waiver MR list, but unfortunately there is no funding for it, thanks Bev Perdue and Obama, I'm glad the $ I put in monthly is something Maddie can't even use. So really until Maddie turns 18, she won't be able to get a whole lot of government assistance or social security.

She has 2 top and 2 bottom teeth that started coming in at 8 months and more are on their way.

Here are some of the things she can do/say:

ah-da

da-da-da

mmmm (just started mmm sound last week!)

mamama

gaga

ba

blow rasberries

laugh

smile

hold 2 toys

bang the toys together

take toys out of a container

sit unassisted

transition from sitting to the floor semi gracefully!

stand when placed against something

take a step when holding someones hands

roll over both ways

extend hands to be picked up

push up when on tummy

eat stage 3 solids and some other table foods

can put a cracker to her mouth

drink whole milk - still needs to be warmed and likes it in a bottle!

She's doing great and making good progress, which is the goal. Still in therapy every other week and may get a walker shortly, thanks therapist Liz, those things aren't cheap! She's staying in the infant room when the other kids move up since she's not as mobile, that way they'll be able to accommodate her. Much more Maddie friendly! I will see how she's doing in 6 months and see if she's ready to move up to the 1 year class, otherwise, we'll just wait until next fall to move up.

We meet to discuss her progress with our early intervention coordinator and to see if we need to make changes, one of my goals is waving and I work on that a lot. I also am really working with her to get a non-verbal hand jesture to communicate, like milk. I thought she did it once, but I don't think that was the case.

Today I called Glaxosmith klein to see if their prescription drug assistance would help or if they had any coupons for Maddie's asthma med b/c it's not cheap, and they follow the same income allowance as the government, so individuals who are already getting government assistance, qualify basically for certain meds for free. They recommended me to some prescription drug assistance non-profits, and it's the same thing, low income. So frustrating, at least we have insurance and don't pay full price.

Maddie update

This is a post from my family blog (June 5, 2011)

Maddie has had some developmental delays thus far among other congenial issues and I haven’t written about it just because I was hoping it was going to go away or be a non-issue. So I’m going to start writing about it all so it’s documented b/c I am starting to forget and for me to vent and deal with it all because it’s very stressful. We’re taking it all one day at a time because otherwise I freak out Googling about every symptom, condition, or change.

Maddie was born with three holes in her heart and low pulse ox, the holes have since closed up, so that it great! The same week we went to the cardiologist, she was admitted into the hospital for wheezing so now we see a pulmanologist and treat her for asthma.

Also she’s at 5 months (she’ 10 months) in gross motor, 6 months in fine motor, and a little higher in everything else with her verbal being the highest which is the low end of average. She has hypotonia (low muscle tone) which results in a lot of the delays. We saw a genetist and are waiting on the results, had an MRI which indicated delayed myeleniation and are seeing the neurologist in 2 weeks which hopefully will give more answers.

I expect to have another MRI in a few months.

She has some eye issues in that her eyes aren’t aligned so we’ve been patching every day but she will most likely still need eye surgery.

She does PT weekly to work on her mobility, but she’s not crawling and just started pushing up at 9 months. She back scoots to get around and can roll. She can sit up unassisted when positioned (8 months).

This week we heard her use multi-syllable nosies, ba-da, da-da, va,da and were excited about that.

She’s been evaluated and enrolled our state’s early intervention program which will help coordinate evaluations, treatments, and work on her meeting her goals with her individual education plan (IEP). I’m sure I’m forgetting something as there’s lots to note and I’ve started making a binder of all her information. I’ll probably post some posts on her individual issues as there’s a lot involved in each one.

She’s such a happy baby and so relaxed and easy going. We just compare her to herself and she is making progress, it’s just at her own pace. She loves to watch Victoria and Victoria is her best motivator and we love her so much!