Noah Got Braces!

Not the kind you're thinking, he got braces for his ankles. They are called Ankle-Foot-Orthotics (AFO's) and are not nearly as bad as I had envisioned when Noah's Physical Therapist recommended them several months ago. Of course, people stare at him in public (what is the big deal with a 2 year old in braces?) but if they help in strengthening my little boys ankles and knees then its ALL worth it! Personally, I think he looks cute in them... I fold his sock over them so it looks like he's wearing tall socks, which is something we all did when I was in high school. The purpose of the AFO's is to put Noah's foot/ankle in a position where he can't lock his knees and he's doing really well in them and it's only been a week. Here's a picture of them!

Also, here's an "update" on the cod liver oil... believe it or not, I've seen a HUGE improvement in Noah! He's soooo much more verbal and jibber jabbers constantly. He did say 'ball' last week in the nursery at church (which is a first) and I'm hearing more consonants. He has lots more energy and has some days where he only takes 1 nap. I've been mixing it into his oatmeal with applesauce, which has worked well. So I plan to continue giving it and definitely recommend it to all parents!

Lastly, Noah's muscle biopsy is scheduled in a week, on June 4. Obviously, this is much more minor than the surgery Noah had at 5 months old but it takes Jamie and I back to that and just how scared we were. I have always hoped and prayed that Noah would never have to have another surgery and here we are ... one week from one. The anesthiology dept. called me this morning to discuss the details of the surgery and the sequence of events that day (which are same as before). Once they are ready to begin the surgery, Jamie and I are able to walk Noah back to the hallway outside the operating room but we have to hand him over right before they take him into the OR. Last time, he was so young, that he was oblivious as to who had him or that we were leaving him... but I know this time will be so much harder, and I know that Noah will cry for us when we hand him over to the nurse. I'm dreading that moment so much. It's hard to leave your baby with a nurse, knowing that he's about to be put to sleep and cut open. Please pray for Noah's procedure to go well without any complications, for his doctor performing it (Dr. Muenstere), and for NORMAL RESULTS! I'm just so ready to have this behind us.

Before & After Pics of our Home Renovations

We are finally finished with our house! And it only took from November to May (no sarcasm intended). Jamie's been spending quite a bit of time working in the yard to get it looking good. But for the most part, the inside is complete. I've posted a few pics as we've progressed but here is the final product ... I didn't take too many pics of the downstairs b/c one room has workout equipment in it and the bedroom is completely empty. Here are the before and after pictures... this is for you Sonia! :)

FOYER

DEN

BREAKFAST ROOM

NOAH'S BEDROOM

(you can see where this was a den that connected to the kitchen; we added a wall, a closet, and sheet-rocked over the fireplace, to make it a bedroom for Noah)

NOAH'S BATHROOM

(LOTS o' changes...)

MASTER BEDROOM

(we enlarged the closet to create his/her's)


MASTER BATHROOM

(new countertops, etc)


GUEST BEDROOM

JAMIE'S FOOTBALL ROOM DOWNSTAIRS

DECK THAT WE ADDED

JAMIE'S FAVORITE "RENOVATION"

Fish Breath!

Ha... I'm sure you're wondering what the heck I'm talking about! I watched Jenny McCarthy on The Doctor's last week. It was an episode devoted to Autism and ways to "cure" your child of it's symptoms. One of the things she talked about was Cod Liver Oil and how her son Evan lost his language skills, but after 4 days on Cod Liver Oil, his language more than doubled. So I looked this stuff up on the internet and read about ALL the benefits of Cod Liver Oil. It is packed with Vitamins A & D, and contains high levels of Omega 3 fatty acids (DHA & EPA, which benefit your eyes, development of the brain, heart, digestive system, etc). It helps boost energy levels and improve your overall mood (used for depression), promotes cognitive function, helps you sleep better, improves immune system, builds strong skeletal system...LOTS and LOTS of benefits. I read where it has helped other kids with their language skills so I thought, why not give it a try?

I bought it in liquid form and orange flavored for kids but it's still AWFUL... fishy with a hint of orange. However, Noah didn't seem to mind, he actually drank it right up, which I was totally surprised about. The only downside is his breath was pretty rough afterwards... I gave him juice AND brushed his teeth. I kept thinking I was smelling the stuff afterwards... hopefully it won't make him smell fishy!!

Mitochondrial What?!

In eliminating causes for Noah's delays, our Neurologist, Dr. Valero, has told us the next step is testing for mitochondrial diseases. I remembered the term from biology and that it had to do with cells but that's all I knew. So of course, I researched it to find out exactly WHAT we are looking for. The mitochondria are the powerhouse of the cells...(ring a bell?) Mitochondria convert oxygen and food into energy. When there is a upset in this process, there is an energy crisis (lack of energy in the child/fatique), and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body. Depending on which cells of the body are affected, you can have problems with muscle weakness/dev. delay, heart, lung, gastrointestinal, vision, & hearing problems, etc etc.... a very long list. Symptoms can vary from mild to life threatening. And this is genetic so, if Noah were to have it, there's a very high chance all of our children would have it.

So we got a call from Dr. Valero's nurse informing us that Noah's blood work came back negative for mito diseases (YAY!!!), however, we still have to proceed with the muscle biopsy (BOO!!!). I requested for Dr. V to call me b/c I had been under the impression the biopsy was no longer necessary... he explained to me that the blood test only lets us know about SOME mito diseases and the muscle biopsy will let us know about the rest. Noah's biopsy is scheduled for June 4 at Children's Hospital. It's a day surgery; they'll put Noah to sleep and will make an incision in his thigh and remove a portion of his muscle. They will then run tests on the muscle and actually plan on freezing some of it for any future testing that they might need to run. The incision should be pretty small (maybe an inch or two long?) and the muscle will be sore for several days to a week. We have an appointment next week with the doctor that will do the biopsy so I should know more then.

I HATE that Noah has to go through yet another surgery, even though it is minor. I was really hoping that we would be able to avoid this, but I trust that Dr. Valero is making the right decisions for Noah. I honestly feel like he doesn't have a mito disease. When I've researched it online, it talks about kids with this will regress in their development and Noah has never taken steps backwards in development. Also, he doesn't have any of the symptoms except for delays... no problems with vision, hearing, heart, lungs, etc. However, even though I feel like the outcome will be fine, it still makes me slightly nervous because there's always the possibility. But I just trust that it's all in God's hands and he will continue to take care of Noah. Please pray for Noah's biopsy results as well as the actual surgery.

Yay for a Good Report!

Noah was sent to an eye doctor a year ago because when you have low muscle tone, it affects vision and the muscles in the eyes too. He had an eye that would wander slightly so we went to a pediatric opthamologist in Huntsville. She was ready to put him in glasses immediately for far-sightedness, at one year old. All children are born far-sighted but it improves over the first several months following birth. But she said Noah's was worse than what is normal for a 1 year old. To be honest, we didn't like her, she was VERY unpersonable, so we went to Alabama Opthamology in B'ham to see Dr. Hein and get a second opinion. Turns out, putting Noah in glasses would have helped his vision but WORSENED his wandering eye. Dr. Hein wanted to keep on eye on it because he felt it would correct itself. Well after a year, it has. His vision is way better and the eye doesn't wander anymore. So we don't have to follow up with him for 2 years! It was great having a doctor tell us, "we'll just see ya'll in 2 years!" That was definitely a first.

I'm sure some of ya'll are probably wandering about the picture of Noah's incision and WHY it's zig-zagged so I thought I would explain... they zig zag it on each side of the head b/c the hair on the sides of our hair grows down, so the hair lays down, over the incision. If they were to have done a straight line, you would be able to see it through his hair b/c hair doesn't grow on his scar. But with a zig-zag incision, the hair covers it up! It's straight across the top of his head, because hair on the top grows forward, therefore it lays over it. Pretty neat, huh?