Monday, July 27, 2009
He's A-Movin'...
Noah began crawling on his own yesterday! He did it several times, going a few feet each time, but I didn't want to get myself too excited because you never know... it could be something that he does once and then doesn't do for another month... however, today he crawled AGAIN and this time, he did even better than yesterday AND I got it on video. In fact, as I type this, he has crawled over to our fireplace and keeps opening the screen to try to get into it... looks like its time to baby-proof!!! As silly as it sounds, I pass the baby-proof gear at stores and have prayed for the day when I can buy them for our house. I don't know if I've ever been SO HAPPY, SO PROUD and SO GRATEFUL! It makes EVERYTHING that we have done SOOO worth it! I just keep thanking God over and over and over...
This is SO HUGE because all of his Physical Therapists have said the only way to get him walking independently is to strengthen the trunk muscles by crawling! Speech delays are also correlated with weak muscles/trunk so hopefully, this is what he needs to really get him taking off!
We'll here's the video... ENJOY!
This is SO HUGE because all of his Physical Therapists have said the only way to get him walking independently is to strengthen the trunk muscles by crawling! Speech delays are also correlated with weak muscles/trunk so hopefully, this is what he needs to really get him taking off!
We'll here's the video... ENJOY!
Tuesday, July 21, 2009
The Good News Just Keeps On Coming...
Dr. Valero's nurse called yesterday to inform me that the bloodwork that they did on July 7 came back NORMAL... they were testing for thyroid problems and muscular dystrophy. YAY!!! Anyways, God continues to bless us with answered prayers and normal results through ALL of these tests.
I think it would be a nice reminder for me to look back at all of our praises and blessings from God through the past 2 years. So, here goes... hopefully I can remember it all! :)
--my pediatrician (and my mom's employer at the time) in the delivery room with me, immediately realized that Noah needed oxygen and gave him immediate care
--a husband (and his parent's/employer) that enabled me to stay home with Noah
--CT scan and EEG came back normal when Noah was in NICU
--MRI at 6 weeks old came back normal
--Appt. with Genetics Physician (Dr. Loose) revealed Noah didn't appear to have Genetic disorder
--GREAT surgeons and a successful procedure for Noah's craniosynostosis surgery at 5 months
--An awesome support system at the UCP Center: great therapists and a precious teacher (Mrs. Becki)that keeps Noah and treats him as one of her own!
--the opportunity to take Noah to Huntsville weekly to receive additional therapy
--Fragile X test, chromosome study, urine organic acids, etc that came back normal (Oct. '08)
--Another MRI that came back normal (Sept. '08)
--Mitochondrial Disease bloodwork came back normal (April '09)
--Good visit with Noah's eye doctor, don't have to go back for 2 years (May '09)
--Insurance approved Noah to receive an Up-n-Go Walker and the Ankle Braces (May'09)
--Muscle Biopsy came back normal (June '09)
--MRI came back normal with progress from last one (July '09)
--Thyroid & Muscular Dystrophy bloodwork came back normal (July'09)
--were able to get in quickly for evaluation in Physical Therapy in B'ham for their "spider suit" program (July '09)
--my parents who support us and help us with Noah. My mom rides with me to H'ville weekly to keep me company and sits in on the sessions so that she knows how to work with Noah at home; they babysit and allow us to have some "couple" time; they've helped us out with some of Noah's therapy expenses (which are QUITE costly, despite insurance)
--my sister who loves keeping Noah and can't go but a few days at a time without seeing him. She also rides with me to H'ville when Mom can't... and she loves Noah with every bit of her heart.
--Jamie's parents that allow him to take off work frequently to go with me and Noah to B'ham for his (monthly) doctor's appointments. They also have helped us with some of the medical procedure costs (which are also very costly)... FYI, BCBS doesn't cover Genetic related procedures!
--my friends that listen and encourage me when I get down. they continually pray for Noah and are just as excited as we are when we get good reports from the doctors. They also help me get my mind off of things even when they don't even know it! :)
--church family that continually prays for Noah
So ... it looks like God has been pretty dang good to me and my family!
I think it would be a nice reminder for me to look back at all of our praises and blessings from God through the past 2 years. So, here goes... hopefully I can remember it all! :)
--my pediatrician (and my mom's employer at the time) in the delivery room with me, immediately realized that Noah needed oxygen and gave him immediate care
--a husband (and his parent's/employer) that enabled me to stay home with Noah
--CT scan and EEG came back normal when Noah was in NICU
--MRI at 6 weeks old came back normal
--Appt. with Genetics Physician (Dr. Loose) revealed Noah didn't appear to have Genetic disorder
--GREAT surgeons and a successful procedure for Noah's craniosynostosis surgery at 5 months
--An awesome support system at the UCP Center: great therapists and a precious teacher (Mrs. Becki)that keeps Noah and treats him as one of her own!
--the opportunity to take Noah to Huntsville weekly to receive additional therapy
--Fragile X test, chromosome study, urine organic acids, etc that came back normal (Oct. '08)
--Another MRI that came back normal (Sept. '08)
--Mitochondrial Disease bloodwork came back normal (April '09)
--Good visit with Noah's eye doctor, don't have to go back for 2 years (May '09)
--Insurance approved Noah to receive an Up-n-Go Walker and the Ankle Braces (May'09)
--Muscle Biopsy came back normal (June '09)
--MRI came back normal with progress from last one (July '09)
--Thyroid & Muscular Dystrophy bloodwork came back normal (July'09)
--were able to get in quickly for evaluation in Physical Therapy in B'ham for their "spider suit" program (July '09)
--my parents who support us and help us with Noah. My mom rides with me to H'ville weekly to keep me company and sits in on the sessions so that she knows how to work with Noah at home; they babysit and allow us to have some "couple" time; they've helped us out with some of Noah's therapy expenses (which are QUITE costly, despite insurance)
--my sister who loves keeping Noah and can't go but a few days at a time without seeing him. She also rides with me to H'ville when Mom can't... and she loves Noah with every bit of her heart.
--Jamie's parents that allow him to take off work frequently to go with me and Noah to B'ham for his (monthly) doctor's appointments. They also have helped us with some of the medical procedure costs (which are also very costly)... FYI, BCBS doesn't cover Genetic related procedures!
--my friends that listen and encourage me when I get down. they continually pray for Noah and are just as excited as we are when we get good reports from the doctors. They also help me get my mind off of things even when they don't even know it! :)
--church family that continually prays for Noah
So ... it looks like God has been pretty dang good to me and my family!
Friday, July 10, 2009
Taking a Stand
Most of you guys are on Facebook so you know about status updates... well the other day I was on FB and noticed a particular status that made reference to "feeling sorry for his co-workers children who are all in some way dysfunctional." The way it was said was completely as a joke and this particular person always has really funny statuses so I knew it wasn't meant to be cruel. However, as the mother of child that has had delays, I found the comment to be offensive and inconsiderate. So I thought, "should I respond? Am I being overly sensitive? or sould I just ignore it?" But the more I thought, the more I realized, I've got to stand up for my child and the special needs community. So I commented that "as the mother of a special needs child, I think that referring to any child as dysfunctional is offensive." I was pretty nervous that it would cause an argument or that I would be told that I was being overly-sensitive or something, but to my surprise, I got an apology and the admittance that it was indeed insensitive. After that, I felt such a sense of accomplishment, like I had won a battle for Noah and for other special needs kids. Even if it was only one person that I had brought awareness to.
I promise you, 2 years ago, I wouldn't have thought a thing about that comment. And I'm preaching to myself to with this entry but dealing with what we have and being around the other children that are apart of the CP Center, it has opened mine and Jamie's eyes to TRYING to be considerate of the phrases we say and whether or not it can offend someone.... such as "that's retarded" or even calling someone retarded, fat, stupid, dumb, ugly (I could go on) is just plain mean. We should quit worrying so much about getting a laugh out of those around us, and focus more on having a kind and loving heart. We are now adults and PARENTS and it's time to be conscious of the things that we say and how they might affect others. We can no longer use the excuse of being an immature teenager and that we "don't know any better" because, guess what, WE DO KNOW BETTER.
"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law." Galatians 5:22-23
I promise you, 2 years ago, I wouldn't have thought a thing about that comment. And I'm preaching to myself to with this entry but dealing with what we have and being around the other children that are apart of the CP Center, it has opened mine and Jamie's eyes to TRYING to be considerate of the phrases we say and whether or not it can offend someone.... such as "that's retarded" or even calling someone retarded, fat, stupid, dumb, ugly (I could go on) is just plain mean. We should quit worrying so much about getting a laugh out of those around us, and focus more on having a kind and loving heart. We are now adults and PARENTS and it's time to be conscious of the things that we say and how they might affect others. We can no longer use the excuse of being an immature teenager and that we "don't know any better" because, guess what, WE DO KNOW BETTER.
"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law." Galatians 5:22-23
Tuesday, July 7, 2009
MRI & Neurology Appointment
Noah had another MRI today in Birmingham. Let me start by saying that it was at Children's South on Acton Road and this was our first time to ever go there... not such a pleasant experience. I'm actually considering calling Children's Hospital to complain, it was that bad. They brought Noah back to do all the routine stuff (weight check, temp, blood pressure, pulse, etc.) and during this I asked if they had the orders to draw blood while he was sedated. Dr. Valero and I had discussed this last week when he called me to give us the biopsy results. I wanted to make sure that it happened because I didn't want to have to make ANOTHER trip to B'ham just for blood... plus, Dr. V and I wanted it to be done while he was asleep so it would be painless. They told me that they didn't have the orders and acted like it was a big inconvenience to have to draw blood. I asked if they could call Dr. Valero's nurse to double-check and explained that with us being out of town, it would be inconvenient to have to come back at a later date just for blood work. They blew me off, and basically gave me the impression that they didn't have time to call Dr. V's office. Okkkkayyyy... so I just took matters into my own hands and called his office myself. I'm on hold with his receptionist when the anesthiologist comes in to discuss Noah's procedure. She asks (as they always do), her: "who this" me: "Noah Brink", her: "what's he having done today" me: "MRI" her: "why?" me: "b/c he's developementally delayed" and then she says, "and because he has a large head?"... ummm, no. She then says to me"you really need to get off the phone because we need to discuss what's going on today". I explained that I was on hold with Noah's neurologist b/c I wanted to check on the orders for the blood work and she said, "well you can hang up on them, because I've already paged Dr. Valero." It was just the way she said everything... so freakin rude! Jamie's eyes were as big as saucers and I was biting my tongue to keep from saying anything to her. She then began talking bad about Dr. Valero and that he "makes promises that we aren't able to fulfill all the time" blah blah blah. (how unprofessional!) Turns out, Dr. Valero did intend for them to do the blood work while Noah was sedated so they got the orders faxed over and everything was good to go.
They take Noah back to the MRI room and for the next 20+ minutes I can hear my little boy SCREAMING his head off! Keep in mind, we are down the hall, in a pre-op room, while he's behind a closed door, there's a movie playing loudly in the hall way and CT machine off to the side that makes a very loud constant racket... and I could hear Noah screaming over all of this. I was fighting back tears and if the room he was in didn't have a keypad on it, I would have gone in to see what the heck was going on! Finally, the nurse comes out and tells me that he is very hard to stick and they had to stick him 5 times to get his IV started and to draw the blood and that he was scared to death. WHAT?! The WHOLE point was for them to draw the blood while he was sedated so that it would be painless! And if they intended on drawing blood BEFORE they put him to sleep, then why didn't they let me go back there and hold him so that he wouldn't be so terrified!? By this point, he's sedated and they've begun the MRI. After another 30 minutes, they bring Noah out and he's doing fine, just really groggy. They said if he can stomach some juice we would be good to go, but it was like they were literally pushing us out the door... in fact, the anesthiologist didn't even come back in to talk to us (like has been done in the past) she left to go home. We have had alot of different procedures done at Children's during the past 2 years and have always felt like Noah was in the BEST of hands and they always been so great but today was awful.
Afterwards, we drove downtown to Children's Hospital to see Dr. Valero. By the time we got there, he had already seen the MRI and told us that it looked good. I'm going to try to explain this so bare with me... Noah's last MRI was done in Sept '08 (at 17 months old) and structurally the brain looked normal but he had "delayed myelination". Myelination is what allows the neurons in the brain to connect (which allows babies to develop, learn new things, and do new things). A 7 year old's brain has much more myelination than a 1 year old's brain. By it being delayed it just meant that he didn't have the myelination of a typical 17 month old. So he chose to do this MRI so that he could compare it to the last one and make sure his brain is progressing. His myelination has increased, meaning that his brain is developing and progressing (GREAT NEWS). Obviously, it's not the brain of a typical and normal developing 2 year old but the fact that it is developing and myelinating is awesome news. I really get the impression that Dr. Valero believes Noah will overcome his delays but obviously, only time will tell. What stinks is that Dr. Valero is leaving Children's and going to Vanderbilt to begin working on the research side of things. I'm sad that we're losing him but praying that our new neurologist will be just as great as he is. He wants us to continue coming in every 6 months and he even told me that he wants to see Noah in 2 - 3 years because he thinks we'll have a completely different kid on our hands. So overall, great neuro appointment! Thank you all for your continued prayers for Noah. God is obviously hearing them because he continues to answer them. I'm just so grateful that all of these recent tests have come back normal and it just reaffirms my belief that Noah is going to overcome his delays and be fine!
They take Noah back to the MRI room and for the next 20+ minutes I can hear my little boy SCREAMING his head off! Keep in mind, we are down the hall, in a pre-op room, while he's behind a closed door, there's a movie playing loudly in the hall way and CT machine off to the side that makes a very loud constant racket... and I could hear Noah screaming over all of this. I was fighting back tears and if the room he was in didn't have a keypad on it, I would have gone in to see what the heck was going on! Finally, the nurse comes out and tells me that he is very hard to stick and they had to stick him 5 times to get his IV started and to draw the blood and that he was scared to death. WHAT?! The WHOLE point was for them to draw the blood while he was sedated so that it would be painless! And if they intended on drawing blood BEFORE they put him to sleep, then why didn't they let me go back there and hold him so that he wouldn't be so terrified!? By this point, he's sedated and they've begun the MRI. After another 30 minutes, they bring Noah out and he's doing fine, just really groggy. They said if he can stomach some juice we would be good to go, but it was like they were literally pushing us out the door... in fact, the anesthiologist didn't even come back in to talk to us (like has been done in the past) she left to go home. We have had alot of different procedures done at Children's during the past 2 years and have always felt like Noah was in the BEST of hands and they always been so great but today was awful.
Afterwards, we drove downtown to Children's Hospital to see Dr. Valero. By the time we got there, he had already seen the MRI and told us that it looked good. I'm going to try to explain this so bare with me... Noah's last MRI was done in Sept '08 (at 17 months old) and structurally the brain looked normal but he had "delayed myelination". Myelination is what allows the neurons in the brain to connect (which allows babies to develop, learn new things, and do new things). A 7 year old's brain has much more myelination than a 1 year old's brain. By it being delayed it just meant that he didn't have the myelination of a typical 17 month old. So he chose to do this MRI so that he could compare it to the last one and make sure his brain is progressing. His myelination has increased, meaning that his brain is developing and progressing (GREAT NEWS). Obviously, it's not the brain of a typical and normal developing 2 year old but the fact that it is developing and myelinating is awesome news. I really get the impression that Dr. Valero believes Noah will overcome his delays but obviously, only time will tell. What stinks is that Dr. Valero is leaving Children's and going to Vanderbilt to begin working on the research side of things. I'm sad that we're losing him but praying that our new neurologist will be just as great as he is. He wants us to continue coming in every 6 months and he even told me that he wants to see Noah in 2 - 3 years because he thinks we'll have a completely different kid on our hands. So overall, great neuro appointment! Thank you all for your continued prayers for Noah. God is obviously hearing them because he continues to answer them. I'm just so grateful that all of these recent tests have come back normal and it just reaffirms my belief that Noah is going to overcome his delays and be fine!
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