2009 Matthew Update...Progress (YEA!)

As we approach the end of 2009 I can honestly say without a doubt, that this was a great year. A great year because since Matthew's been born, we've been dealing and worrying about one thing or another trying to get him on the right track (not really knowing what that was) and I think we've finally reached a place of tranquility, something I've been praying for for a long time.

As most of you know, Matthew has a rare interstitial lung disease called NEHI (it affects his oxygen saturation levels and his growth) and he has endured countless tests and surgical procedures. He currently wears oxygen at night and has a g-tube to help with weight gain. The prognosis is good for NEHI, though there is still not enough known about the disease to be sure of anything. Anyway, back in 2007 it was hard to wrap our mind around the fact that our child had to wear oxygen at night but, it has been a fairly easy thing to adjust to. His lack of growth has been the most difficult. We were very opposed to getting the g-tube and avoided it as long as we could, but it just got to a point where things were not progressing. He would take a couple of steps forward with weight gain and lose it all during the next cold or illness...not to mention that he had delayed gastric emptying which made him vomit for a very long time. It was very frustrating trying to get him to eat and trying to invent new things to give him. Once, his stomach issue got better our wonderful doctor told us it was time for a tube, that enough was enough and that it was critical at his age that he grow and that she did not want to compromise his brain development...so we agreed.

Though we had some initial problems with the g-tube and the mere fact that it was the most painful surgical procedure he had had, it has been a godsend. Since its placement, everything seems to have just fallen into place, like finding the missing pieces of a puzzle. His growth has helped his oxygen saturation levels, his retractions, his mouth breathing, his stomach problems and overall development. We have seen many little light bulb moments for him and though he still has a ways to go, we are so very proud of him for being such a trooper through it all.

So we just got back from Cincinnati and Dr. Young was very happy to see his progress, very thrilled to see his growth and ecstatic to hear that we have been able to turn his oxygen down from time to time. We have been given the green light to try and slowly wean him at our comfort level...so we are very happy about that but are going to be very cautious and slow. She said that some children that have NEHI still do not reach that deep REM sleep even though their saturation levels are good; so again, we need to be careful.

The feeding team at Cincinnati Children's was also very pleased to see Matthew's growth. He is now at 33lbs. He is finally right where he needs to be. And he's shot up in heighth, even though he'll always be short because of us. So they gave us the green light to slowly wean him off his tube feedings...again slowly. May take another year or so...but, hey...great news.

So, we just want to say thank you to everyone who has shared in Matthew's journey. For those who have helped in spreading awareness about this disease. We appreciate all the prayers, and those people who took the time to ask about him and extend a hand. We hope that his progress will bring hope to those families that are beginning their journey with NEHI or for those still searching for answers. To all chILD families, regardless of your type, we cannot thank you enough for your advice and support...God Bless you all!!!!

Fall is now upon us...

Well the kids started school at their new school. I have to say the transition was smooth and I am so very happy with that. Sara thrives in school. She is a true Montessori child and Matthew is still observing but having a lot of fun riding the bus and truly loves life. Learning to ride his bike was the highlight of the summer for him and I'm sure come next spring we'll have a hard time keeping him off.

Me, I'm trying to get back on a schedule for working-out and getting things done while the kids are in school. Planning to go to the Daughtry concert with an old friend and looking forward to it very much. Also, thinking about going back to school until I can go back to work. We'll have to see what works best for right now.

Praying for some special people in my life right now who have health issues and need some answers. It's a horrible feeling when you can't help in any way...(sigh).

Rob is doing well at work and enjoys his kids tremendously. We'll be working on the house this fall as we have done nothing to the interior since we had so much to do with the outside. One stepping stone at a time though, right?

Peace!

Matthew Update

So today we drove once again to Cincinnati to see Dr. Young for a re-check. She was very happy with Matthew's progress. He now weighs 29.26 and is growing steadily on the chart and on a curve...YEA! The only changes are to reduce his pulmicort to once a day and to get his annual Echo. Otherwise, keep doing what we're doing and make sure we all get our flu shot.

On another note, we were bumbed we didn't get to go to the chILD conference this past weekend, but Dr. Young talked about some key points one of which is that more and more evidence is pointing to NEHI being a genetic thing. So we may be able to participate in a study at some point which may include some DNA testing. Should be interesting.

We also stopped and got his glasses readjusted and ear band replaced. We're supposed to be patching his left eye, but we've not been very consistent and now trying to get Matthew to start patching again for his amblyopia has been almost impossible. But, we can't complain; he's such a trooper and has been very cooperative with everything else. All-in-all, I'd say today was a great day.

Mini Vacation

We drove to Indy on Thursday. We decided to take a mini vacation and do the Family Adventure Pack thing. I thought it was a pretty good deal. We got 4 tickets to the Children's Museum, 4 tickets to the Zoo and Hotel stay at the Holiday Inn East, all for $175.00.

We packed snacks and lunch and headed out. We had decided to go to the Zoo first because it was supposed to be cooler; but it started to rain about half way there. When we arrived, around 12:00, we decided to go to the museum since it was raining. So, we checked in, changed our clothes, ate our lunch and headed out. Of course the sun began to shine right as we were leaving. Oh well, we headed to the Museum anyway. It was a blast.

For those of you who have never been to the Indianapolis Children's Museum, let me tell you, it is quite amazing. There is so much to do. There are four levels and each one is really interesting.

There are Dinosaur bones, old trains, miniature rooms recreated, Star Wars, Mad Scientist area with construction zone, Carousel, play area and so much more...

Here are just a few pics:

The museum is always busy, but we stayed till they closed and we made it to every floor. The kids immediately fell asleep when we took off in the car. Worth every penny, I'd say!

After, we ate at Damon's (kids ate free), changed and headed for the pool. Other than 3 other kids, we had the pool to ourselves. Matthew and Sara did not want to leave.

After a good nights sleep and breakfast at the hotel, we headed to the Zoo. Another amazing day...hot, but fun. I'm not sure why, but I still like our zoo better; but Sara enjoyed the Dolphin show and Matthew, as always, enjoyed the train ride.

-Anyway, if you ever get the opportunity, Indy is a lot of fun and pretty inexpensive.

Thanks for sharing and reading.

Matthew Update

So on the 10th we drove back to Cincinnati to see the feeding team and have Matthew's Mic-Key button replaced with an AMT. Everything went very well. He weighed in at 28.4 lb.s, so he is slowly growing on a curve now. We are to keep doing what we're doing for now and have a recheck in another 6 months or so.

So far the AMT seems to be working well. The only thing I have a hard time with is getting the feeding tube extension attached to the AMT...a little harder to get in for some reason. Oh well. We really can't complain, things have been going very well. Thanks to all of you for your continued support and prayers.

Eye Appointment and PEG Replacement

Ok, so I have to vent about our 17 hour day yesterday. We left the house at 4:00 am...the trip there was perfectly fine...Matthew slept the entire way...we got there at 7:15 or so (we made good time) and beat the morning traffic, which was our goal...because if anyone one knows...after you reach Dayton, traffic can get pretty hectic. Anyway, we go to Matthew's eye appointment (just a recheck, cuz last time they told us he wasn't favoring his left eye anymore and that his glasses were doing great). Anyway, they do these picture tests and the nurse tells us that Matthew is still favoring his left eye over his right...the nurse says we'll probably have to patch the good eye a couple of hours every day....(ok, not fun but not too bad). Well doc comes in a redoes the test and says NO, probably 4 to 6 hours a day...(oh just great)....just one more thing we have to get him to do for ALMOST THE WHOLE FRICKIN DAY!Ok, so that appointment is over and we are a bit bumbed out. We go to his next appointment, which they say should only last 5 minutes. 5 minutes to pull out the PEG and then replace it with the mic-key button. We give Matthew Tylenol an hour before for the minimal pain he should endure. So in comes the doc, she goes over it with us and we begin to hold our son down for her to quickly pull this thing out....she pulls, he screams! She pulls some more, and more and more and more and more and more...time is passing by very slowly and Rob and I are looking at each other like COME ON LADY, PULL IT OUT! He's screaming bloody murder and she says "It won't come out!" I said "WHAT DO YOU MEAN IT WON'T COME OUT, IS THAT NORMAL TO HAPPEN SOMETIMES?" "No" is her response. Ok, at this point I start to see stars and have to sit down. He's still screaming, Rob is getting pissed and I'm losing consciousness.Finally, she stops. She says, "looks like we're going to have to go in and get it?" "WHAT?" Yea, surgery! She says, "well you could come back another day..." Another day, Uh, NO! We drove three hours to have this done here and we are not leaving until it's done. She asks...did Matthew eat anything today? Dread came over me. He had had Pediasure at 7:30 in the morning. That meant surgery could not take place until 4:00 in the afternoon. Oh, I cried...and cried!To make a long story short...we waited until 3:15 pm for Matthew to be sedated and have another endoscopic procedure to get his PEG Tube out and replace with the mic-key button. My poor baby has endured so much and remains to be an amazing, resiliant kid. He played and smiled and waved to everyone as we waited those long hours. Neither one of us had anything to eat except a candy bar out of the room so as to not remind Matthew that he had not had anything to eat all day! Surgery took 10 minutes...! They told us it was half way out, but scar tissue had formed and it was lodged in the middle. They said it would have hurt him to pull it out the rest of the way...YOU THINK?Anyway, we left around 5 and got home about 9:00pm. A very long, heart-wrenching day for all of us.God forgive me for complaining, because in a hopsital you see so many horrific things that are far worse than your own, but when its your family and your in the moment, nothing seems as bad.I'm truly sorry if this scares anyone, it was not my intention to freak anyone out. All I can say is that if you're having your PEG-tube replaced, have it done early in the am and don't let your little one eat in case it won't come out and they have to go in and remove it. Otherwise, you have to wait 6 to 8 hours before they'll put them under.Thanks for reading...

The New Year

Ok, so a New Year has begun and though our kids have slight colds right now, things are so much better than they were at this time last year. We now know exactly what Matthew has, we are dealing with it well. He is no longer having issues with the delayed gastric emptying and has been weaned off almost all the meds. His sensory issues from the steroids and albuterol syrup are gone. His glasses corrected his wincing (which we thought was reflux), and his g-tube is helping tremendously with his weight. He is happy, energetic, and recuperates a lot faster with colds and common illnesses! He is in school now and is doing well with speech therapy! This year we are definately having a Birthday party for him; as we did not last year because of doctors appointments and just the muck of life.

Sara is so beautiful. Her curly hair definately takes over her whole self; however she is so refined and poised with it pulled back and cute as a button when she has it in piggy-tails. She is smart and so girly. She is taking gymnastics and ballet. She flitters around the house on her tippy toes and loves her princess dresses. She thrives in school and is very into crafts and being outside! She love her brother and has such a giving heart.

At home we are dealing with sibling rivalry, refusals to nap and occasional tantrums...and yet, we are truly blessed by it all. If you were to have asked a year ago, we would have said that we would take the behavioral problems over the not knowing of an illness. Oh the tears we have shed and the heartache of wondering if what we were doing was right.

We have walked on many stepping stones this past year and we find ourselves now in place of joyful chaos! Thanks to all of you for walking with us and sharing in our journey!