Thursday, April 17, 2014
Yesterday was a BIG day for the Thomas family! Andy was promoted to Gunnery Sergeant. We are so proud of him and everything he has accomplished in the Marine Corps! The Military lifestyle is not always the easiest but it is without a doubt a very Honorable position for my husband to stand. It has been amazing to watch him grow into the strong dedicated leader he is today. Here's to another 3-8 yrs my love :) Semper Fi!
Posted by Lindsay at 10:22 AM
Wednesday, April 16, 2014
Monday, April 14, 2014
Hello prayer warriors! We had a little change of plans in the pre-op room and decided to try and remove the device all together instead of exchanging it. He has been doing so well and this device is really only supposed to be a temporary fix. Last time we removed it he then went down hill fast so my prayer is that he will now tolerate not having it. So now I wait for him to be out of the OR and back in recovery. Then we will return in a few days for lab work. Hopefully they will stay stable and that's all! If not then he will have surgery again next Wednesday to replace the device.
Posted by Lindsay at 1:29 PM
I don't think you ever get used to signing consent forms for surgeries. I probable should have kept tract of how many times they have taken Gavin into surgery since he has been home. I was counting until last year when I found myself in the ICU watching him on a ventilator wondering how in the world did we get to this point! That's when I lost tract. That's when surgeries and procedures took on something else. I remember when Kaitlyn had ear tubes placed. It was a big deal and I was scared. It was terrible hard watching her wake up in recovery. That was so minor compared to Gavin's stuff but as a mom nothing is really minor. Gavin does really good now until it's time to go to sleep. He is very aware of what's happening and I can't blame him for his outpour of anger at that point. Usually when he wakes up he has another device/tube of some sort. If I was him I would be angry too. We are very thankful for his portAcath device now which allows him to have medication easily before going into the OR for the mask. We check into Radys in a few hours for a outpatient surgery. I think he is already well aware as I stopped his formula last night and haven't fed him his normal breakfast this morning. It should be an uneventful day hopefully and we will be back home tonight. Prayers always welcomed for no problems!
Posted by Lindsay at 8:19 AM
Sunday, April 13, 2014
I have been thinking about writing this post for a few weeks now and just haven't been able to gather all my thoughts. So It may still be a little disorganized :) For the last 3 months behind the scenes in the Thomas home we have been going through the very long process of evaluating Gavin for a cochlear implant. A very personal decision that we felt like we needed to make with no interference from the outside world. When we stared the process I had no idea if it was best for Gavin. Actually during the developmental eval I was asked multiple questions regarding our thoughts and desires for Gavin. One of the questions asked was "On a scale of 0-10 how confident are you that Gavin should get an implant"? I was very honest in my answer when I said "Five" what followed was a very surprised look on the psychologist face. You see we started this process with no expectations, I felt like we needed to look into every possible option for Gavin. Gavin is deaf and no device, no hearing aid, implant or therapy will change that. Thank goodness it won't change that because we love Gavin just the way he is. We also want Gavin to be happy. If that means no hearing aids or a cochlear implant that's Ok. Through this process we learned so much more about Gavin then we knew before. He has an amazing potential for speech. His vocal tone is different then children that have been deaf their entire life. I have always thought that Gavin was hearing earlier in his life. From all the assessments it looks like he most likely was not born deaf. Even with his hearing aids he wants to talk but can't hear enough tones to fully communicate. He still holds toys up to his ears eagerly trying to hear. For these reasons and many more we decided to go through all the testing and evaluations. We had our final meeting last Thursday which was intended to look at the devices and make some hard decisions. I have been praying for direction for weeks on this hard decision. This is actually one of the hardest decisions we have ever made. There is a major controversy in the Deaf community regarding implants. To be honest I understand some of it but not all of it. I understand that they do not look at being deaf as a disability. I don't look at Gavin as disabled because he is deaf. The part I don't fully understand is why hearing aids are acceptable but not an implant. I have read way more articles and blogs then I need to :) and I just continue to pray we make the right decision for Gavin. The final decision will be made in a few weeks.
Posted by Lindsay at 6:13 PM
Thursday, April 3, 2014
It's been busy busy in the Thomas home. This week Gavin had some more testing done. He had a MRI, CT scan and a echo done. The specialist have been trying to put together all the missing pieces of Gavins medical problems. The records we received from Bulgaria are simple not complete or fully accurate. In order to fully understand Gavins future medical concerns we have to first determine what caused all these problems to begin with. Whether it is genetic or not has been a big question for the Genetic specialist. There is a lot of speculation of a few syndromes that could be the reason for Gavins problems but we wont know for sure until all the testing is back. Hopefully we get some answers to these questions to help us plan for the best future for Gavin. We are also in the process of planning another surgery for Gavin. He currently has a stent in his ureter. The stent device is supposed to be a temporary fix. But last time we removed the stent his kidney swelled and we had a 6 week hospital stay that followed. So instead of removing it the urologist will just continue to exchange it with a new one every few months. Gavin has been doing so well it's way past do to be exchanged. In January after we got back from Make-A-Wish we removed Gavin's leg catheter bag. I was pretty positive that this was going to cause his renal function to get worse but we had to give it a trial run and see how he would do. We have been so surprised to see him now 3 months later without the leg bag and actually doing better. He is now fully toilet trained except at night when we have to decompress the kidney. I wonder if he will continue to stabilize out for another 6 months? Only God knows what's in store for Gavin. Gavin's donor is still in the screening process. She is actually pretty far into it now. She will see the psychologist next week and then its time for all the scans. I think the scans are a hard part of this process. Many times it's when problems are identified that the donor had no idea about. As anxious as the entire process is, we have to continue to trust that everything will work out, exactly how it should be. I should knock on wood NOW but we have settled into a nice calm stretch. His first year home was one hospital stay after another. It's so nice to just have him home and stable!
Posted by Lindsay at 9:06 PM
Sunday, March 23, 2014
All I ever wanted growing up was to be a nurse and a Mommy. My mom was a wonderful mother to my brothers and I. She loved having little kids around and if you ask her today she would tell you "It was the best years of my life"! Some days I wonder what I have gotten myself into! Life with five small children is never boring, never. It is also never calm, unless they are asleep. It is never clean, especially with a Tyler around. But all that aside I would not change it for the world. I cannot imagine a clean, calm, quiet home. I love the constant entertainment, constant laughter, constant laundry and dishes and more then anything the amount of love in our home. I cannot imagine my life any other way. I sometimes imagine what life will be like when all these little people grow up and leave. I often look into their eyes and wish I could freeze time. I can't freeze time but I sure can make the best of ever moment with them. I pray that God will continue to send blessings our way. I know a few of you may think I am a tad crazy but look at these faces. How could you not want a few more :)
Posted by Lindsay at 9:57 PM