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

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!

A Wedding, a Vacation, a Family Outing, a Birthday, and a Baby!

We had a busy couple of weeks this month.... my college friend Kellie got married on June 20 and I was a bridesmaid in the wedding. It really meant alot to be apart of the celebration and it allowed me to get to know Kellie's husband, David, alot better. The ceremony was one of the best I've ever seen because it was so funny but heartfelt... David could hardly speak he was so emotional and Kellie kept giggling and laying her head on his chest. It was just precious... I think at times we get so caught up in trying to have this serious or "perfect" wedding ceremony and I think that Kellie and David's vows were a reflection of each of their personalities. I had a great time being apart of the festivities and made new friends in the process.

After the wedding reception, Jamie and I headed home to pack for the beach, since we were leaving out early the next morning. We intended to leave at 7am but were running a little behind and finally got out of town around 8ish. We arrived in Sandestin around 3pm, got checked in, unpacked, and went for an early dinner at Bayou Bill's for some seafood. The following day, we spent the day at the pool and then went to Seaside for family beach pictures that evening. We used Memories by Micha and I highly recommend her! She did a great job and is extremely reasonably priced. Her website is http://www.memoriesbymicha.com/. In fact, the new picture in the blog header is one she took. Check out her website... and I hope you'll consider her for your beach pictures if you head to the Destin area!

We spent each day at the pool and Noah did so great! We would get out there late morning and he would play in the pool with us for an hour or so, then he would fall asleep on a lounge chair and nap under the umbrella for an hour or so, which allowed Jamie and I to lay out. He would wake back up and play some more in the pool, then Jamie would take him to the room and eat lunch; which allowed me to lay out a little longer. During the week, I noticed that Noah did a considerable amount more jabbering, especially when he was in the pool! (He has continued jabbering lots even now that we are home!) We ate alot of great seafood (The Back Porch, Bud & Alley's, Louisiana Lagniappe, etc), did a lot of relaxing, and I managing to get some shopping in at the outlets. I definitely wasn't ready to come home on Friday but it was probably best that we did because it was SOOO HOT and poor Noah was drained. We got home around 2pm on Friday afternoon to house guests... my parents air conditioning went out so they have been staying with us since Friday. That night, we grilled out and had our friends, Brett & Chenequa over. Chenequa was scheduled to have a c-section on Monday morning, so this was our last chance to hang out with them before the baby arrived.

Saturday morning, I got up and went to Huntsville with my 2 sister-in-laws and my mother-in-law. We planned a little getaway because Stacey just found out that she's having a baby boy, Christopher "Eastlon" Brink, so we went shopping to look for clothes, furniture, bedding, etc. We stayed at the Westin at Bridgestreet and had a great time. Once we were finished shopping for baby Eastlon, we did a little shopping for ourselves, then hit up The Proposal at The Monaco... and whats a trip to Bridgestreet without stopping in for chocolate covered strawberries and a chocolate covered apple from the Chocolate Crocodile!

We returned home Sunday late afternoon just in time for my sister, Lindsay's 25th birthday dinner. Yes, my baby sister is 25... crazy!! Anyways, my whole family and my sis's boyfriend, Derrick, went to dinner, then came back to my house for cake, ice cream, and presents.

Monday morning, I woke up super early so that I could get to hospital by 6:30 to see Chenequa before her c-section. Amanda, Melissa, and I were there with the family and awaited the baby's arrival. Everything went great and her sweet baby girl, Hannah Reece, was born at 7:36am, weighing in at 8lbs 7oz and 19.5 in long. We were able to visit with Chenequa for a little while once she came out of recovery but I had to leave the hospital around 10:30 to go pick Noah up from Jamie's work. After Jamie got off work, he and I went back to the hospital and we got to hold sweet little Hannah and visit with Brett... poor Chenequa was nauseated from all the pain medicine, so she slept most of the time we were there. Hannah's a doll and I'm so happy for our best friends' and what lies ahead for them. Being a parent is undescribeable and I'm so excited that they now get to experience the joys of it!

Jamie and me at Kellie and David's wedding reception

Noah relaxing out by the pool

Dinner at Louisiana Lagniappe in Destin

Me and baby Hannah

Close up

Answered Prayers!

We finally got THE CALL from our neurologist yesterday... Noah's muscle biopsy came back NORMAL!!! Praise our Lord for taking care of my baby boy! Jamie and I are thrilled and grateful. I spoke with Dr. Valero for a little while to discuss our next steps and when Noah is sedated for his MRI on July 7, they will also take some more blood to look at thyroid problems and a CK (?) that will let us know about things such as muscular dystrophy and muscular myopathies. I hope I have that right, it's REALLY hard to understand him over the phone. Anyways, I believe that all this will come back just fine. Dr. V did tell me that he's had patients walk as late as 3 years old and grow up to be normal healthy kids. I think that will be Noah's case, except I think he walk sooner than 3 because he's doing so well right now.

Also, we were able to get in for an evaluation with Children's Hospital for physical therapy... the evaluation is July 30. So after that, we will know if/how long Noah and I will be in Birmingham for his "burst" of therapy.

Please continue to pray for Noah and his progress, as well as his upcoming MRI and tests.

Noah's 2 Year Check Up

On Friday, 6/19, we finally had Noah's two year check up. The reason it's so far past his birthday is because I wanted to get in with Dr. Crenshaw instead of the other docs in the practice. They're all great, but I just LOVE Dr. Crenshaw. Plus, Jamie and I were super nervous about discussing Noah's MMR vaccine. We made the decision to put it off at his 1 year appointment (against our pediatrician's wishes) and have since changed pediatricians. At Noah's 18 month check, Dr. Crenshaw understood our desire to hold off on it and was very supportive. So I was expecting that she would want to give it at this 2 yr. appointment. To our COMPLETE surprise, she told us that she would prefer to hold off. Reason being that when a child is developmentally delayed with an unknown cause, she said research suggests it's best to postpone the vaccine. She didn't SAY that vaccines cause dev. problems/autism but she said, she preferred to wait until we AT LEAST get our results from the biopsy or until Noah is 3 yrs. old when he's further along developmentally. Her reasoning was that right now, Noah is making good progress and if she were to give the vaccine and then he were to regress in development, then it would confuse us into thinking that it was the vaccine when it very well could be something else. I appreciate that SO MUCH, because most doctor's are so pro vaccinations that they will give them regardless if a child is showing signs of autism/delays at the 12 month checkup... then parents blame it on the vaccine. So it makes it really difficult to know if the child would have autism regardless of the vaccine or because of the vaccine. Does that make sense? Here's an example of what I mean, a friend of mine asked her doctor what she typically does if she thinks a patient might have autism at the 12 month checkup (would she mention it to the mom? -- she said not at this time), but that she would "make note in the child's chart of possible autism" then proceed with the vaccine, then at the next checkup, if the child is still showing autism signs, mention it to the parents. So that very well could be the explanation WHY so many parents are blaming vaccines for their child's autism. Anyways, in our case, because Noah is already delayed and the MMR has been linked with "causing" delays, we've been very confused as to what we should do. Needless to say, we were so incredibly thankful for Dr. Crenshaw's insight and after our appointment with her, I believe the key is to discussing it with your pediatrician and determining the right time for YOUR child... because as we all know, no one kid is the same! Now you know why I was adament about getting Noah in to see her! :) She's worth the wait.

Anyways, here's his 2 year stats:
weight -- 28lbs -- 50th%
height -- 36 1/4" -- 90th%
head circum. -- don't remember, but it was 97th% (which is normal for a child that's had surgery on his skull, their heads tend to be bigger)

So the trend in Noah's height/weight remains the same as it has since birth, still long and lean.... and he's top-heavy with his big head! :) haha... I say that with love!