Thursday, March 31, 2011

Carpet & "more"

Ryder LOVES the new carpet!!!! He has already taken 3 steps and walks around holding the wall and other objects/toys, which he has never done before. He loves to roll around and snuggle with the carpet and bear crawls too!!! We are so very grateful to the Anderson Family for this great blessing:)

I am watching a precious newborn girl for the next 2 months (2x a week). Today was our first day and boy was Ryder jealous!!!! Luckily he had therapies and lots of attention that he was at the center of:) He was sweet though. When the baby cried, he'd point and crawl to her until I held her and she stopped crying--then he was happy and went on with his playing:) He refused to take any naps with her in the house (he usually takes 3 naps a day still!). When she left at 4:30, Ryder crashed for several hours--it was sooo funny!!!

Ryder is signing more all the time now!!! He is starting to imitate some sounds. I am so excited for next week when he gets the tubes in his ears. I really think it will help with speech & having less ear infections. Hopefully it will help with his balance too--we'll see:)

Tuesday, March 15, 2011

Appointments today & More

Busy day..

1st a trip to a new eye doctor. He said Ryder has 20/40 vision (the best he could tell on an 18 mo old at least!) He has a stigmatism & nystagmus (which we knew). He thinks Ryder will probably be prescribed glasses on his next visit in July. I think he would look pretty stinkin cute in glasses---just not sure how you keep those on a baby?!

Next stop--hair cut!!! Oh My CUTENESS!!!!!!! I will post pictures! I want to eat him up:)

Then, off to the ENT. Ryder is scheduled to have tubes put in his ears on April 8th. One ear the dr. said was completely covered in hard earwax & couldn't see. The other eardrum was sunken in. He said it was like someone on an airplane's would be, but it doesn't "pop." With his repeated ear infections and this news, I think tubes will help a lot. Poor guy hears sounds that are muffled most of the time :( This just might improve his speech and following simple directions---we can only hope so:)

We should be having carpeting installed within the next week (or 2 at the most)!!!! THANKS SOOOO very much to the Anderson family who is helping us out with this!!!! I can't tell you how much of a blessing this is for us!!!! Ryder bumps his head on the concrete so much and gets bruises and his knees are so dry from it (not to mention how hard it is to clean!)

Uncle Eddie moved out this past weekend....YAY (for us--luv you brother!) Now all 5 of us aren't in 1 room sharing 1 closet--uugh! The boys have their own room now. I see sleep in my near future:)

We still have the GI appointment, Case Manager meeting and lab work (repeat) in the next few days.

Some fun news:
I emailed the United Leukodystrophy Foundation (ulf) several weeks ago regarding ribbons, symbols, shirts etc.. for leukodystrophy awareness. I haven't found a universal sign for leukodystrophy (since it is rare), but I want to spread awareness. When you see a pink ribbon- you think of Breast Cancer. When you see a puzzle piece- you think of Autism. There is currently nothing for leukodystrophy. Anyhow, I have designed a ribbon & picture for leukodystrophy. The president/founder of the ULF called me personally and is very interested in seeing my design:) Who knows...ya'll might be seeing it soon to spread awareness:)

Tuesday, March 8, 2011

18 months

18 month check up- Can you believe he is 18 months already!!!
Ryder has lost a pound and weighs in at 21.15- 6%
height-31.5- 30%
head-46.7- 10%

I need to schedule an appointment for an ENT, optomologist, & nutritionist.
He has labs for allergies & PMD test pending
GI & Metabolic/Genetic Specialist appointments coming up--( 8 doctors & 5 therapist---can this baby see any more specialist ???)

He still hasn't been feeling well--vomiting a lot and diarrhea--yuck!

I am in search for a new speech therapist (the one we have now is nice, but not a good fit for Ryder)

I saw a kidney specialist yesterday and she said I am a carrier of Al Ports syndrome (runs on my dad's side of the family) I've had blood (last 7 yrs)& now protein in my urine -which isn't a good sign. I'm still confused about this since I don't believe my dad has Al Port's symptoms, but know my uncle (his twin) and several other family member's suffered/died from this syndrome. I was devastated yesterday when the doctor said all 3 of my boys have a 50% chance of getting Al Port's syndrome. I have enough on my plate with Ry's health problems, but don't want to imagine the other two (plus Ry) having Kidney issues!!!

This journey really has been up and down for us/me (emotionally, physically, financially). I feel so very blessed in my life and  with my beautiful boys, but struggle w/ all this medical stuff and want to do the best I can for my family. It's in God's hands and I can only pray I have the strength to follow HIS path and where it takes us!

Thursday, March 3, 2011

My life just became a little easier--Yay:)

Ryder was FINALLY approved for Mercy Care as a second health insurance!!!!! This means we won't be piling on any more crazy doctor bills-YAY YAY YAY!!!! That gets rid of some stress:) Another plus is that it will take hours off my crazy schedule since I don't have to search for funding for his genetic tests that his primary insurance won't cover!! That also means the 3rd round of PMD testing is covered--yeppers, I'm a happy Mama!!

Ryder, however, isn't so happy. He is recovering from 2 ear infections, a yucky cough (bronchitis), a viral rash, fever & runny nose. His pediatrician put him on antibiotics last Wednesday. We went back to the doctors today because the antibiotics caused a yeast infection....not so fun for poor little Ryder!

Today was the first day in 2 weeks that he seemed happy and did awesome in therapy! When his DSI therapist asked him to roll the ball to mommy, he turned  1/2 way around to find me and gave me the ball. Then she asked him to give the ball to Noah and he turned around and found him too!!! He has never done this before and hasn't been able to "find" or point to any of us--so this was a BIG deal!