A Much Needed Update

Hello all....so sorry for the delay. . . we have been very busy to say the least.

Well we arrived back in Pittsburgh on November 27th. Caleb did have his palate repaired and the recovery was difficult. While he was recovering from that surgery the poor guy tore his Nissan wrap (the tightening of the tummy to help with his reflux). So needless to say we had to have the wrap redone. Then we finally went home after New Years-thanks to all who send cookies, presents, etc. to us while we were in the hospital for the holidays, once again you all are awesome.

We were home for about two days, 40 hours, and Caleb got really sick and was life-flighted to Children's he was hypoglycemic (low sugar), hypovolemic (low fluid volume), and septic (had an infection. He was fluid resuscitated twice and almost went into cardiac arrest he spent two weeks in the PICU and step down ICU. He fought back and recovered well and was able to come back home. He is now back on TPN (IV nutrition) and low volume feeds (just enough to keep his gut active). I have learned how to take care of the IV line-very nervewracking. We have visited the ER three times since we have been home in the last week and a half. Brian and I woke up this morning and we think he now has a UTI so I just put a urine specimen bag on him and we will send that to the hospital to see what that shows--poor guy.

So needless to say I am sure you can see why I haven't updated in awhile. I miss you all so much and cannot thank you enough for all the prayers.

Now that I hope we are somewhat settled (knock on wood) I will try to update more regularly.

God Bless you all!!

God Bless Caleb!!

Hi everyone, this is Jen Straub, Sarah's friend. Sarah has asked me to post a quick blog to bring everyone up to speed because she is unable to get a connection at the hospital (they are behind double doors) and she is not able to leave the room.

I am honored to be able to share some wonderful news with everyone!! They just got the results of the Biopsy Caleb had at Duke in NC and he is producing T-Cells!!!!! They have not yet left his Thymus, but in time they should get trained and go out into his body to fight infection. Dr. Markert had told them that it would not be uncommon to not be able to see any T-Cells at this early stage, but not this special boy!! He is ahead of the pack!! This is fabulous news and means, so far, the fight for the transplant was worth every ounce of effort.

Caleb also had his cleft palette repaired last Wednesday. He is recovering well, but they have to keep everything out of his mouth for 3 weeks, and with a teething toddler, well you know. His lip adhesion surgery is scheduled for January 3rd. They will basically fuse the two parts of his lip together to help create more tissue for future surgeries.

They are also working to get Caleb off of the TPN drug (nutrition drug) before he heads home. Some of his liver levels were still off so they are monitoring that. At this point, if they are able to regulate those levels, the Drs are hopeful that Sarah and Caleb will be able to make their journey home on Friday!!! That is right. There is a strong likelihood that they will be in the comfort of their own home Friday!! Now we must continue our prayers because you can't count on it until it happens, but it would surely be wonderful for them all!!!

Once they are home they will still have to stay in isolation and Sarah and Brian will not be able to have any direct contact with anyone. They will have to stay in very isolated environments and will have to be protective of anything entering the home. This includes sterilizing everything, clothes included, before they enter the door. But it will be good to have them together and in the comfort of their own home instead of stuck in one room in the hospital without Brian being able to be with them everyday!!

The last comment Sarah wanted me to share is a request for prayers for the family of Samantha Welch. She is an amazing 17-year old girl who battled AML and just recently (December 1st I believe) lost her battle. She is now pain-free and in God's grace I am sure, but please pray for her parents, Eugene and Faith, two special people who touched Sarah and her mom's (Linda) hearts as they grieve and remember the joy their daughter brought to those who met her. God Bless you all!!

God Bless all of you!!!!!

For anyone looking for ways to contact Sarah directly, feel free to send an email to me and I will be happy to help as Sarah gets transitioned and doesn't have a strong connection to the internet. My email is jstrauby@comcast.net.

God Bless all of you and your families during this magical season. I know Caleb has certainly blessed us and helped to remind me and my family of what the true meaning of this season is. May you and yours be blessed as well.

God Bless Caleb and God Bless his parents for their relentless fight for their boy. I have never known more loving and determined people and I am even more blessed to be able to call them friends. I thank them for allowing me to share in their story and I thank all of you for continuing to pray for Caleb and to follow his journey. You have all helped so much by telling Caleb's story and helping to find companies generous enough to donate things to this special family. The latest was the donation to cover the costs of Caleb's hearing aids until he turns 18!! This is from a company that wants to remain anonymous, but was through the WTOV9 Season of Miracles program. Thank you WTOV9!!!! There are so many different ways to help this special family and I thank all of you on behalf of Sarah and Brian for all that you have done and all the kindness and generosity you have shown them. I know that when they can they will spend months making up with all the hugs they wish they could give out now!!

God Bless!! Merry Christmas!!! Happy Holidays!!!

Biopsy is Done

Well all again sorry for the delay...we are still waiting on our fixed computer.

Caleb had his biopsy this past Friday. We won't know anything for at least a week. We are praying hard that the Thymus has grafted and they see some T-cell function. They have also mentioned that we MAY be heading back to Pittsburgh Children's around the 26th. However, this is only if Caleb stays healthy. So we are praying hard that he continues to stay healthy and infections stay away. We are hoping once we get back to Pittsburgh we can get Caleb home shortly after that to get him out of the hospital and decrease the chances of him being exposed to something. He has learned to wave and blow kisses-I have to say it is too cute!! He amazes us more and more and what a flirt.

My brother Ben worked miracles and got a company, Windcor, to donate windows for our home. Thank you so much to Windcor and Ben. Our friends and family worked tireously all day yesterday and got them all in for us. Thanks to Ben, Dad, Chad, Gary, Shani, Justin, Jimmy, Russ, Brian and more on getting those in for us. We have also found out that Pandhandle Restoration and Cleaning is going to clean our house for us thoroughly with the full gear for us at no charge. In addition, Sean Jamison, is going to put new flooring in Caleb's room at no charge. Thank you to all of you for such unbelievable generosity to our family. Again, we will not be able to thank you all enough.

Well all, I will let you know what is going on as soon as we know.

A couple prayers for a couple people who I know are going through some rough times right now: Josephine Wilson-who fell last week and broke her ankle and finger. I love you gram; The Welch family whose daughter is fighting AML (typer of cancer); Keep fighting Sam. Christi's family- who lost their house in the San Diego fires. I love you all and are praying for you all.

God Bless everyone!!

God Bless Caleb!!

Sorry for the Delay

Hi all, Sorry for the delay in updates. Our computer broke so it is hard to get to the Ronald McDonald Room to use the computer.

Caleb is playing tons. We have a couple issues. His LFTs, liver function tests, are up so they are doing some tests to see what is causing it. Hopefully, if anything it is his TPN. We are working on his feeds to hopefully get him up to a high level. Slowly but surely we are working towards it. His biopsy on his Thymus can't even happen until EARLIEST November 12th. So hopefully we continue to keep Caleb healthy. As soon as we get our computer back I will post some pics.

I will update more soon.

God Bless everyone.

God Bless Caleb!!

Updates

Well all here are a couple updates. . .

Feeding
Caleb is still having issues regarding gagging after getting a feed because he is trying to figure out how to burp, but can't due to the Nissan wrap. The docs said it can take up to 4 months for his stomach to get used to the wrap. They are doing a couple 'rule-out' tests (shunt series x-rays, GI swallow, Gastric Emptying Study) to make sure nothing else is causing the gagging. Once I vent the Mic-key he gets rid of some gas and feels much better. It is just tough to see him so uncomfortable. AND yes....Caleb got his Mic-key button (replaces the G-tube). The Mic-key is so much better as it is a lot less cumbersome than the G-tube and doesn't tug on his belly as much. It is also a lot easier to dress the little one.

Teeth
Caleb has two teeth!! His bottom two front teeth came in and they are so cute. I think he may be trying to cut more teeth as his body temp is a little warmer (hopefully it is nothing else) than normal.

UTI
Caleb has a UTI so he is on some tough IV antibiotics to hopefully get rid of the infection.

Hearing Aid
Caleb has been wearing his hearing aid more, which he doesn't like it when I put it in but is happy after it is in. We had to get a new mold done here about a month ago, because he has grown. However, he wasn't able to wear it a lot lately due to a lot of stuff going on here. The hearing aid seems to be whistling a lot so I am going to ask if Audiology can come and look at it and make sure it fits okay...doesn't seem like it sits down far enough into his ear canal.

Development
I ordered a play pen for Caleb online. We are hoping this will help him with crawling and more developmental milestones as it is hard and dangerous to do so in a metal crib. In addition, the floors here are not the cleanest so I am not willing to put him on the floor. Hopefully, he will like the play pen!

Well there are more updates but my man is waking up from a nap and wants to play. I will write more later.

God Bless you all!!

God Bless Caleb!!

Pictures before and After Transplant

Well the poor guy is trying to cut a whole bunch of teeth at once right now...Man oh man. But despite the teeth, he entertains. Everyone who has come in today says how good he looks. Our man has some big bruises on his legs from the Transplant but he seems to be in good spirits. They are trying to feed him again through his G-tube. We will have to wait and see how that works, as he was retching a lot when we tried feeds before his transplant. Retching (gagging) is the last thing you want right now as it would tear his Nissan wrap out and that would be bad as he could reflux again if the wrap comes out. So we have started at a VERY small rate, 2ml/hour (approximately 13cc less than a half ounce)-small huh?!?

Brian, Dad, Jean, and Ron left today to go back to WV. We already miss them so much. They were here for a week and it was very nice to have them here. It is so hard to be away from Brian for so long. We are trying to find a way to get him back down here in approximately two weeks. I love you babe and miss you very much already.

We know we will be here for at least a couple months, but there is the concern of what needs to be done to the house before we could bring Caleb home. Man the list of things that need to be done is overwhelming to say the least. The biggest priority is getting it 'clean' in every way to have it be a safe environment for Caleb. We are looking into ripping up his carpet in his room to have a more allergen free type of flooring, new windows in the house (as ours are very old and most do not have storm windows anymore), and a very thorough clean (especially-the basement and duct work) as we were flooded a couple years ago and I want to make sure no remnants are left. The list is overwhelming and with me not working and the market in regards to Brian's job (loan officer) isn't at its best right now....I will be trying to talk to several companies to see if they can help us out with this items and more as I am sure the list will grow. If anyone has any suggestions please let me know. I had considered writing Extreme Home Makeover in the past, but not sure if there is time and if honestly we would get picked. I guess it is something to think about and how would you know if you don't try. But seriously, if anyone has any suggestions on who I could contact please let me know. I will be writing Lysol later today, as we use about 120 of their wipes in two days...CRAZY huh. Who knows if they would donate some, but it is worth a shot right?!?!?

Well again, I wanted to give you all a short update and let you know what is going on here. I have included some pictures below too and I should have some videos later in the week!! Enjoy.

God Bless Caleb!!

Photo and video editing at www.OneTrueMedia.com

Yeahhhhhhhhhhhhhh Thymus

Thank God we have a Thymus and it is in Caleb's legs!! Wooo hooo.

He went to the PICU after surgery and was getting ready to go to the floor when he started having some pain management issues. They got that under control and he was able to come back to the floor the next morning. The bonus to it all was the nurses on Caleb's floor fought so hard to keep Caleb's room for us (it is one of three big rooms) so we wouldn't have to moved to a small room. They are a good group of girls here, just like the nurses in Pittsburgh.

He has been playing like crazy today and is resting well right now. He was a little fussy earlier today, but we attribute that to teething and the soreness in his little legs. Dr. Markert let us know that the Thymus was a really good match. Now we have to pray for T cell function. We should know how that is in about five months. So, we still have to watch him pretty closely and keep him healthy for at least the five months while we wait to see if the transplant worked.

I will write more later...but I wanted to give a short update as I know a lot of you are anxiously awaiting an update.

Also, a couple of prayers. Our little buddy PJ (one of Caleb's Duke PICU buddies) was re-admitted and is intibated again. He is not able to keep his oxygen levels up, so, his family could use some extra prayers. Please visit his website, the link is on the left side of this screen (PJAngelChild). Also, we would like to welcome home baby Zoe. Our friends John and Lee Roberts just got home from Vietnam with their baby girl Zoe. Pleas visit their website also and see the adorable pictures of little Zoe. The link to her website is at the left also.

I also want to thank all of you for your continual comments and prayers for our family. You all mean so much to us!! We are blessed to have each and every one of you in our lives. Thank you so much, from the bottom of our hearts. God Bless you all, you are truly amazing.

God Bless Caleb!!

Surgery is Started

Well, Caleb went into surgery earlier than planned. The first case cancelled so Caleb went in at 8:45 and they are planning on a two hour surgery. They have also planned for him to go to the PICU after the surgery to closely monitor him due to his extabation issues and pain. As soon as we hear any more I will update. Thank you all for your prayers. We love you all. We are so happy that this day has come. We pray that he recovers well and that this thymus works and gives him a full-functioning immune system.

Thank you all again. I will update as soon as I can.

God Bless Caleb!!

Transplant at 10:00 a.m.

Hey all!!! Caleb's transplant is scheduled for 10:00 a.m. tomorrow morning. Just wanted to let you all know when he was suppossed to go in. They will do some final tests tomorrow morning on the Thymus before the transplant!!! PRAY HARD!!!

Thanks to all!!

God Bless Caleb!!

Third Dose of ATG

First off, I have to appologize for the delay in updates. I have to admit I was a little more emotionally distraught after the cancellation of the transplant two weeks ago than I let on in my last post. BUT. . . Caleb has been in the ICU for the past couple days getting ATG (the medicine infusion they give before transplant). He is getting his last infusion tonight and we have a potential transplant date on WEDNESDAY!!! So PLEASE say TONS of prayers. I will post more with pics later, but we are very tired and just got back to the hotel and will have a couple long days in front of us.

Again, thank you all of you for your phone calls, cards, emails, prayers, etc. You all are a wonderful support system for our family. Again, I appologize for the delay in updates. But hopefully things will continue to 'stay the course'.

God bless you all.

God Bless Caleb!!