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?

After 3 Months Wait...

I finally got my curtains! I ordered them in January and have been anxiously awaiting their completion. It was completely worth the wait as I'm SO happy with them and the way they look. I absolutely recommend Linda Hogan with All Strings Attached because she does a fantastic job and is reasonably priced.

Birthday Boy

Noah's 2nd birthday was this past Thursday. Noah and I slept in late (9ish) and had pancakes for breakfast. Jamie took the afternoon off so we all went to the park. This little girl (probably around 4 years old) kept coming up to Noah and trying to touch him. I crawled up in the gymset with Noah and kept taking him down the slide. While we were in the top of the thing, the girl came up there and started touching him again, she then proceeds to hug him.. okay no big deal, I can handle a hug. Then, next thing I know, the girl has planted a kiss right on my child's mouth! I yelled, "no no no don't kiss him!" and Jamie says, "okay, I think it's time for us to go somewhere else!" I mean, hello ... swine flu! I know this kind of thing can happen at wee care or in the nursery at church and I would never know... but it still freaked me out that this possibly germy little girl just kissed my child. After the park, we went to my parent's house because mom cooked dinner and had bought Noah a cake. It was a good day, all day, different family members would call and sing happy birthday to Noah over the phone and he would just smile the biggest smile!

We had his birthday party on Saturday, 5/2 for our family at our house. Thankfully, we'd planned on it being small and indoors because it rained all day long. My mom and I decided to make Noah's cake this year, a Monkey on top of a sheet cake (which it will probably be the only time we do it). I got up at 6 and we began the cake shortly after that and didn't finish it until 2pm. It took A LONG TIME to decorate because the icing kept softening and we would have to refridgerate it to harden it back up. But it turned out really cute and it was delicious! For some reason when Noah woke up from his nap, at 4:45 (everyone got there at 5) he was kind of fussy, but to his credit, he is on an antibiotic for yucky congestion. When he got up, he had some crazy bedhead and my mom and I laughed, well, it apparently hurt his feelings because he started crying! He was so sensitive after that and anytime anyone would talk to him, he would pucker up. My dad (Noah's Poppa and his favorite person!) pretty much held him the whole time to keep him happy. He settled down soon after everyone arrived but was kind of bashful. He's not really big on large crowds of people. We had BBQ sandwishes and cake and then Noah opened presents. We had a good time celebrating and it was nice getting our families together.

New Direction...

I've decided to take a new direction with my blog, and I'll admit this is really hard and I'm kind of nervous about putting this out there for ANYONE to read,. When you have a child that is considered "special needs" you feel so incredibly protective of them and tend to be very selective over who you share it with. In past blog posts, I've been very careful to not mention anything about Noah's delays. But I've prayed about it and I feel like this might allow me to connect with mothers/children of similar situations, plus I think it might be therapeutic for me, and at the very least, it might get some of my readers (all 3 of you ... ha!:) to begin praying for Noah's journey. And what better way to start than from the beginning, 2 years ago. Although I will warn you, this is lengthy.

This past Thursday, April 30, marked Noah's 2nd birthday.... When Noah was delivered, he wasn't breathing well at all, so he was immediately put on oxygen and our pediatricians called Huntsville Hospital to come get him and for him to be admitted to the Neonatal Intensive Care Unit. I literally got to see him for 2 seconds before they took him to the nursery for oxygen. The ambulance got there a few hours after he was born (during this time, I didn't get to see him) and they brought him in the room for me to say goodbye and off they went with my brand new baby who I had yet to even touch. Jamie, my dad, and Jamie's parents went to Huntsville while my mom and sister stayed behind with me. The following morning, Noah had a seizure that had to be stopped with phenobarbital. On day 3 in the NICU, the doctors decided it was best to intabate Noah and give him surfactant. Shortly after that, he was taken off the ventilator and breathing fine.

I was released from Helen Keller and was able to go to Huntsville 4 days after Noah was born. I'm telling you, it was all so surreal. I kept telling mom, "I had a baby, but it seems like its all in my mind because he's not with me." Once I got there, we were told that he had low muscle tone, couldn't maintain his body temperature (which runs risk for infections), and up until this point, he had been on an IV. On Friday (the day I got there) they let us attempt to bottle feed him (he was too weak to nurse). He would barely take 1/4 oz., they would pour the rest of the milk that he couldn't drink down a feeding tube that was in his mouth. Visitation was only a few hours at a time and they would let us hold him, change his diaper, and feed him... we didn't miss a single visitation because I was afraid Noah would feel lonely or abandoned. It was EXHAUSTING, physically and emotionally. During his stay, they did a CT Scan and EEG to try to determine the cause of the seizure... everything came back normal. Noah was released on May 14, after 15 days in the NICU, although he still had body temp issues and still wasn't taking in much milk.

It was scary those first few weeks home b/c Noah was losing weight. We had to take him to see our ped's every day for weight checks... they told us he would be re-admitted if he didn't gain overnight. We also had to check his temperature constantly and if it was too low, wrap him in warm towels straight out the dryer. Our a/c was set on 88 degrees in the middle of May, in an attempt to keep Noah's temp up! By the time he was 8 weeks old, he had overcome the temp issues and he was eating much better, however, he still had low muscle tone and lacked the reflexes that all babies are born with. He also still wasn't holding up his head on his own.

We were sent to a Genetics Doctor who told us Noah didn't have a genetic disorder but he was pretty sure Noah had craniosynostosis of the sagittal suture and he referred us to a Craniofacial Surgeon at Children's in B'ham. Turns out, he was right. Synostosis is the premature closing of one or more of the sutures in the skull. This can put pressure on the brain, cause headaches, developmental delays, etc. The only solution is surgery. We decided to go through with surgery and it was scheduled for Oct. 1, 2007 (Noah was 5 months old) It was a major surgery where they make an incision from one ear, across the top of his head, to the other ear and make incisions in his skull to re-shape it. The surgery was a success... however it was really hard on Noah. It knocked him back developmentally to a newborn and it took several months for him to fully recover. Since birth, Noah has been delayed in most areas. Shortly after surgery, he began physically, occupation, and speech therapies at the CP Center (the center treats all special needs kids; they are not limited to those with CP). I also have been taking Noah to Huntsville since July '08, each week, where he receives physical, occupational, and speech therapies (in addition to what he gets at the CP Center). He was almost a year old when he began rolling from tummy to back. Noah sat up at 15 months old. At 2, he's still not walking, crawling, or talking. But he's doing GREAT! He makes lots of sounds and has said "uh-oh" and "hi" but it's kind of sporatic. He seems to understands alot of what we say. He goes onto his hands and knees (from sitting) all the time but just won't crawl. He will stand while holding onto something, but he can't pull himself to standing yet; and he can take steps with us holding his hand. He still has weakness in his trunk/core, which affects everything because strength starts from the core and moves out (from core to shoulders to arms, to hands, fingers).

Our neurologist at Children's Hosp. is wonderful. Basically, he says that Noah's diagnosis is "developmental delay" and he thinks its from the difficulty following delivery and his surgery. Developmental delay is really a "lack of diagnosis" or a catch-all when they can't figure out what's causing a delay. He is just doing all the tests he can think of, to try and eliminate all possibilities of what the underlying problem is and so far, everythings coming back normal (PRAISE GOD!) He told us we may never find anything and that Noah may catch up developmentally and be fine (which is what Jamie and I believe will happen). But at times, it can be frustrated STILL not having any answers... but at the same time, if we had a diagnosis, then we would know what Noah's capabilities would (or wouldn't) be... not knowing allows us to have hope for a completely normal recovery.

Noah had blood work done 3 weeks ago that has been sent to Baylor Univ. in TX. They are now looking for mitochondrial diseases, which affect muscles. If this comes back positive, there's a good chance all of our children would have it. We should have the results in about 5 more weeks (hopefully less). The positive note, is that our neuro doesn't think Noah has a mitochondrial disease, he's just doing the testing b/c it was the next step in eliminating causes. Also, in June, he will have another MRI. Please add Noah to your prayer lists that these both come back normal! Noah is being fitted for Ankle-Foot Orthotics (AFO's) on Monday to help him in walking and he begins an intensive therapy program (2 hours per day, 3 days a week) during the month of May. Hopefully, this will have him walking by the end of the summer (fingers crossed!) The braces are temporary because Noah's ankles are weak, so he locks his knees. It's hard to take a step with locked knees, so the braces will help strengthen his ankles so that he learns to stand without locking his knees. Then we will wean him out of the braces.

Noah is PRECIOUS! He is such a happy, easy-going boy. He's so loving and tender-hearted. I honestly could not fathom my life without him in it. I know that this is all God's plan and I trust Him... but it's hard to not get frustrated and down at times. Especially since we are 2 years into it without any diagnosis. But then I think "what kind of mother would I have been if we hadn't dealt with this?" and I realize just HOW MUCH I've learned from it all... how much more patient I am, I'm stronger than I ever thought, and I don't take things for granted... I LONG for the day when he talks my head off from sun up to sun down and is running all over the house, getting in to everything he can get his hands on! Noah is my little blessing and regardless WHAT our outcome may be, Jamie and I will ALWAYS be his biggest advocate.

Noah on the ventilator -- 2 days old


Holding Noah the first time in the NICU -- 4 days old
(WHEW, we look EXHAUSTED!)


Noah in ICU following his surgery in B'ham with his new, perfectly-shaped head
@ 5 months old


The incision from his surgery



Noah on his 2nd Birthday!