Fall 2010

Ok so 2010 has been a difficult year to say the least...we started the year with my aunt recovering from uterine cancer, a dear friend who we consider family passing away from bladder cancer, and my step-grandmother passing from bone cancer. It's been mentally exhausting to say the least but here we are and as a my dear friend used to say "It is what it is".

On another note, my beautiful daughter turned 6 in October; where has the time gone? It was the first year we had 80+ degree weather on her birthday and we were able to celebrate outside, it was fun. She enjoys school, has lots of little friends and is definitely blossoming into such a wonderful little person. She is really a joy!!

My little man is doing well. He just started Taekwondo and absolutely loves it. He is coming out of his shell at school and I hear has a following of little girls who like to take care of him/mother him (too cute). As far has his weight issues go, he is exactly where he should be, the doctors are very pleased. We have been weaning him somewhat off his g-tube feedings and were given the green light today to stop his feeds altogether. If all goes well, they will take it out at our next visit in 6 months...YEA, progress! His oxygen requirements will be addressed once the g-tube is permanently out, but we are hopeful that things are going well in that area as well.

Rob is still at the Red Cross and I am still at home trying to keep up with all that is life. So until my next update, Happy Thanksgiving and God Bless!

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!

Matthew's G-Tube

So, Rob and I had been dreading the day that Matthew would have to get the G-Tube...but, after many months, things still were not progressing. The date was set for Wednesday, November 19th; I have to add though that the week before, Sara got the Croup, Matthew fell down at school and hit his cheek on a table (huge bruise) and later scratched himself under his eye with a toy car. He looked pretty bad (better now though)! It was also scheduled for me to take Matthew to the Pediatrician's on Tuesday, the day before his surgery for a pre-operation evaluation, but I ended up taking both kids to the doctor on Monday because Sara was still coughing. That's when I found out she had Croup. The very same evening (Monday), I developed a fever, chills, sore throat, and just felt horrible, my dad had to come over and help me with the kids on Tuesday because I just couldn't function. My fever broke around 9:00am (thank goodness) but I still felt crappy. Sara went to my mom's that night and we prepared ourselves for the drive and trip to Cincinnati.

Once we arrived, things moved pretty quickly. Matthew had a Bronchoscopy/lavage and then Endoscopy with PEG placement (g-tube); they also took biopsy samples. Initial results are that in looking in to his bronchioles, all looks well, but we need to wait for results from the lab. Doc noticed that at the back of Matthew's tongue he has developed adenoid tissue; which could cause snoring and obstructive sleep apnea. I was like NOT AGAIN!!!!!!! Fortunately, Matthew does not snore, but we have to keep an eye on it. If he has to go through another surgery, I don't know what I'll do!!!!!!!!! Anyway, g-tube was placed and the surgery went well. Now on to recovery...uuuggghh!

So now, I'm losing my voice, Matthew has a tube sticking out of his stomach and I'm petrified to hurt him. Morphine was administered for pain that first day and then Tylenol w/Codeine after. He did really well. He really is a brave, tough little boy! He was so uncomfortable though. He just wanted to sit the entire time. The nurses said they were surprised by that because usually that puts a lot of pressure on the area. Anyway, they said we could leave Thursday night, but he just didn't seem like he was ready, so we stayed. He got his IV taken out late Thursday, which helped his mood tremendously. The lady from Apria came and gave us a lesson on g-tube feeding and a supply for 5 days. We left the hospital around noon today!

It is so hard to see your child with a tube sticking out of their belly. It breaks your heart to hear "Mimmy, it hurts". It is so hard to see your little boy is out of it because of the drugs and it is so hard to just know that he's already been through the ringer.

We are optimistic that the tube will help and we are happy that he did so well. It's just going to take some time to get used to. In about 3 months, we'll go back and they'll put in a mickey button, which will replace the tube looking thing in his stomach and be more flush to his skin. In the meantime, I have to figure out how to keep this tube and valve from being in the way of everyday life. Also, Matthew has a slight fever now...so I have to wonder if he's getting what I have or if he's getting infection from the tube placement.

Anyway, this is his update, sorry if I sound defeated right now, I'm just tired, and worried and sick of being sick.

Thanks to all of you who continuously pray for our son and for taking the time out of your lives to ask about ours. We appreciate your kind words.

Babette and Family
www.myspace.com/gierkebl
http://www.childfoundation.us/

P.S. Somehow this last week I lost all emails and contact information from my outlook. I am relying on the emails I am currently receiving to send stuff out; so if you get this, please send me your contact info, I would really appreciate it.

Matthew Update

So, last Wednesday, the 15th of October, we drove back to Cincinnati for Matthew's re-check. Overall, it looks like Matthew is doing better; however, his weight was the main topic. Matthew gained like 7oz's in 4 months; very disappointing to say the least; and since his gastric emptying scan came back normal recently, the procedure we were going to have done is no longer an option. So today, we drove to Cincinnati again for the feeding team to evaluate his eating. They wanted to make sure he didn't have any trouble chewing, swallowing, gagging, aspirating, etc...and of course, he did awesome! Unfortunately, since he was sick last week, he also lost weight...again, very disappointing!!! It makes you feel COMPLETELY HELPLESS AND DEFEATED as a parent! He just can't keep up with all the calories he is burning from his breathing hard. I wish I could give him some of my own fat.

So, although we were reassured that we were doing very well with what he was eating at home, they asked us to try a few other things and if we didn't see any gain within 4 to 6 weeks, a g-tube would be necessary. We are going to pray and do our best, but we have finally come to terms with the fact that the g-tube may be the best thing for him.

Have I mentioned that Cincinnati Children's Hospital is fantastic. They never cease to impress me. It's a long drive but well worth it.

Sara's 4th Birthday

So Sara had her Princess Birthday Party. She looked very cute, along with all her little Princess friends. We handed out wands to the girls and the boys received home-made capes. The school allowed us to use the Pole Barn and boy did that work out nicely. I think we'll be using it again for other events as well. So, we had face-painting and Briana and Conner were nice enough to volunteer their time helping with that and we had a ball toss and crepe paper contest. Winners were Annika and Kaleigh. It was crazy, but a lot of fun. We appreciate all our friends and family and the time we were able to spend with them.

Matthew's Glasses

Well, Matthew got his glasses. Amazingly, he put them on and hasn't messed with them. He is adjusting really well and looks pretty handsome too. Expensive, YES...but worth it if he can see better. We are so proud of him.

Last day of Soccer...

Well, I would have to say that Sara enjoyed soccer. Highlights would have to be her kicking the dirt, picking the flowers and the grass, watching her teammates run after the ball and pointing things out in the sky! It was hilarious.

Actually, she did really well for being the smallest one on the team and she of course was not the only one oblivious at times to what was going on. She dribbled the ball well and had a great time. She even got to play with her friends Jacob and Parker.

I'm sure, we will do it all over again next year!

Nostalgia

As most of you know, my mother is from Colombia and most of her side of the family still reside there. I miss them all horribly and wish I could go back more often. Now with Matthew and his lung disorder, I'm not sure when we'll go back...we'd have to arrange for oxygen when we get there and he'd have to wear it 24/7 because of the high elevation. Not sure I'm ready for all that yet. I guess we'll just have to take it one step at a time.

Elsita (my Aunt) and Jenny (my cousin)...

Les extrano mucho!

Newest Member of the Family

This is the newest member of our extended Family.Ian F. Cardenas

Born July 10, 2008

Parents are Edwin and Morgan Cardenas

Matthew Update

Ok, so Matthew had an Opthamology appointment this morning to check his eyes because of prolonged steroid use. Good news is that there is no sign of glaucoma or cataract; which we really didn't expect; however, we did find out that he needs glasses (I guess I should be ok with that, but it's just one more thing to have to add to his already stressful life...

Secondly, we met Dr. Kahl (GI doc). He is wonderful by the way! Matthew hasn't gained any weight since the last time we were in Cincinnati (still at 23 lb.s for a 28 month old)...like way way way off the chart. Anyway, Matthew has DGE so his food does not pass quickly through his body, which gives him a full feeling. So, our main concern was that they were going to recommend the G tube and then we'd have problems because of too much stuff in his tummy unable to pass. Well our concern was valid. They are now doing a new procedure which involves opening the lower valve with a balloon and then injecting botox to relax the muscle; the balloon comes out but the opening remains relaxed enough to let food pass better through the system. It's done as an endoscopy procedure. In and out...supposedly no side effects. It lasts about 4 months, but their hope is that it gets these kids on the chart and pass the hump so that they don't need to rely on GJ tubes. No gaurantees obviously, but so far 9 out of the 10 kids have had good results. We are encouraged by this option.

A Day at the Park!

When Cousins Come Around

When our cousins come around,

there's a smile upon our face,

we laugh and play as long as we can,

making memories from place to place;

friendships we hope will last,

are things you can't replace,

so when our cousins come around,

our family we embrace.

Author Unknown

Soccer

Well, Sara started soccer Tuesday....how cute is that? Hopefully she'll follow instructions well. I think every parent hopes that when their kid starts a brand new sport.

Anyway, our lives a gettting a bit more busy now that the kids are getting older. I'm sure it going to get more expensive too.

More later...

chILD Conference

So we just got back from the 2008 chILD Conference. It was great to meet so many other parents who know exactly what we are going through with Matthew. There was only one other family from Indiana and they live close to Louisville. It's unfortunate that we have to come together under these circumstances; however, it was an education for all of us and a very emotional weekend.

We learned how the Foundation got started and where they'd like it to go. It's only been around for about 5 years so we hope to help in whatever we can to keep things moving along. There is so much more research that needs to be done to help our kiddos.

During a Family Round session we heard a brief snippit of everyone's personal journey with chILD...I'm pretty sure everyone cried. It was probably the most emotional part of the conference, although there were many other times, we felt and saw tears.

The top five rare lung disease doctors from around the country attended this conference and gave us all the opportunity to sit and discuss anything with them individually, in group discussion, and as a panel group. They answered questions and tried to clarify things that were confusing to us. These doctors are incredible, easily accessible, and very passionate about what they do. We are so fortunate that we found the Yahoo support site which led us to Dr. Lisa Young, as we might still be trying to figure out things out. She is the second one from the left.

We also inquired about taking Matthew to Colombia...it's been a concern because the elevation is a lot higher and the higher you go, the harder it is to breathe. Fortunately we spoke with the elevation expert, Dr. Deterding (far right). She is from Denver and as you know, elevation levels are a lot higher there. So anyway, she said that we should go...that Matthew will probably need oxygen 24/7 there, but that if we have the proper set-up and equipment, that we should not limit him from anything. We were very happy to get that news. We'll probably wait until he understands the whole oxygen thing a bit better though...because it will probably be difficult to get him to wear it all the time vs. only at night.

We met a lot of incredible people this weekend and we are truly blessed with new found friends. I only wish more parents could have come, although we know all too well that it's so difficult these days to travel with the economy the way it is.

So anyway, this was our weekend and we have to re-adjust to being home now so, more stepping stones later...God Bless!

Adjusting

Well the kids seem to be adjusting well to summer camp; Matthew did cry yesterday and today while getting out of the car but seemed to calm down pretty quickly. These last two days he's come out of class smiling...so I consider it a success! When your child has an illness it definately takes you to another level of paranoia, but it's so important to give your kids the same treatment as everyone else; if it's at all possible. Sara was supposed to go to the Zoo with her class and it was canceled because of the uncertainty of storms...(it of course did not rain) Oh well!

The nice thing about summer camp is that they will have these same teachers when they start school in the fall...BONUS! I love Three Rivers Montessori.