December 2012

Hello All! Just wanted to give a quick update on Colt. Colt started Mother's Day out in September and is adjusting pretty well. He only goes 2 days a week, but those 2 days have really helped his socialization skills. He still cries a little when I drop him off, but his teachers send me pictures of him right after I leave and he is perfectly happy. I couldn't ask for better teachers for Colt- they are so patient and kind and understand his medical background, which puts me at ease. I'm not sure if I mentioned in a previous blog that Colt is recieving speech therapy through ECI. His therapist use to work at the school I taught at so it worked out perfectly that she can now be his speech therapist! Colt has definitely made improvements in his speech since starting therapy, but mothers intuition told me that there was still something not right. Colt understands/comprehends speech perfectly fine. He cannot get the words out to tell us what he wants. We have been doing sign language with him, but recently he has started not wanting to sign at all. His therapist mentioned yesterday that she thinks he could possibly have something called speech apraxia. Basically, Colt understands speech and knows what he wants to say in his head, but his brain is missing the step that tells his mouth to move and get the words out. We honestly don't know if this was caused by all the chemo he was exposed to or if he was just born with the issue....we probably will never know, but my thinking is it was from the chemo because he was saying a few words before he went to transplant. The difficult part of this for me, is there is no long term research on kids that have been exposed to chemo at such a young age and all the other nasty drugs he had to take. I believe with intense speech therapy that Colt can overcome this condition. He is a fighter naturally, so this is just another battle for him. It is really hard as a mom to see your child struggle so hard to talk, when it comes so natural to the majority of the population. I will do whatever it takes to give Colt the best chance at the future. Like I mentioned before, his speech therapist is awesome and I know with time my little fighter will be talking. He is very verbal, you just dont know what he is telling you a lot of the times! He can clearly say- momma, daddy, no, yes/yah, ball, more, mine, ack for snack, mine, and sometimes says I did it. So we know he can talk, its just going to take a lot of repetition for him to learn new words and hold onto those words. Please continue to keep Colt in your prayers :)

Colt's 2nd birthday

It's been a while since I updated the blog, so here it goes... We celebrated Colts 2nd birthday on October 18th. We took him to Kemah on his actual birthday and then that weekend we had a party for him at jump n jungle. It was so nice to be able to celebrate with family and friends this year. Last year colt was still on isolation and could not be around many people. You truly do not realize how much the little things matter most in life, until they are taken away. My family appreciates spending time together much more after the challenges we have faced with colt. Colt's immune system is working so well and he is responding well to immunizations that we got the go ahead to enroll him in a Mother's Day out program. It has been a big adjustment for colt and myself. Colt is very attached to me and has some anxiety issues when I'm not around, but we are working through that. His teachers are very understanding and love colt so much. Ms. Amy always sends me pictures of colt to ease my mind and let me know he is ok and having fun at school. I couldn't have asked for a better teacher for colt :) As most of you know, colt is delayed in the speech area and is receiving therapy through ECI. He is making progress....he now says- momma, daddy, bye bye, ball, I did it, hi, go. I'm very aware that might not seem like much for a 2 year old to say, but doctors cannot say what kind of damage the chemo has done to colts brain. He received chemo from 14 weeks old till 10 months old and not to mention he was on high dose steroids for almost 18 months. I'm certain that colt will eventually catch up and be a talking machine. For now, I will keep working with him and signing with him. I believe children rise to the expectations that people give them. I heard back from Colt's donor last week and he told me how much he has been praying for our family and that donating his marrow for colt was a big part of his life. I will never be able to express how thankful I am for him giving colt the chance at a healthy life. Hopefully in the near future I can give y'all some more information on this wonderful young man, but for now we are respecting his privacy. Soooo a lot of people on Facebook are doing the 30 days of thankfulness ( write what you are thankful for each day in November) and I was going to jump on the bandwagon, but I realized no one wants me to go on and on about all the things I'm thankful for AND if colt has taught me Anything, it's that I wake up and thank god for everything I have EVERYDAY! Life is so precious and I try to make the best out of everyday. I definitely think I sometimes have parents survivorship guilt. When I constantly hear about HLH kids passing I sometimes feel guilty about posting pictures of how well colt is doing. And then on the other hand, I want to give other HLH families hope! So that's all for now. Thank you for your continued prayers for my sweet boy. He truly is a miracle and I know god has big things in store for him :)

Colt's donor

This afternoon I recieved an email from colts BMT coordinator saying that colts donor had released his information! Within a few minutes I got an email with all his info :) in order to respect his privacy I will not post his name or his picture. I did reach out to him by email and am looking forward to hearing back from him. If he is ok with me sharing a little about him, then I will post more info. I did make him a book on shuttetfly of colts journey through 3 BMT's and one year post transplant. I have spent many hours making sure the boom is just "perfect" and I hope he will realize how special he is to my family. But for now I will tell you that colts donor is a 23 year old male that lives in Washington. Hopefully in the near future I will have more to update :)

Life with a busy 22 month old

Where do I start???? Colt has been doing things that typical 22 month olds do :) including testing his mommys patience.But I am so grateful that he is doing things that a healthy child should be doing. Some of you may know that colt is a little delayed in speech, which is no surprise considering what he has been through and all the chemo he had. I had colt evaluated by ECI last month since the speech wait list is a year long at TCH. ECI comes to our home and works with colt once a week. I have no doubt with their help colt will be back on track with his speech in know time. With that being said, he had a hearing test today to rule out that he couldn't hear us talking to him....he passed with flying colors. In July colt had his one year post transplant test. All of his test came in the normal ranges. He also had some more immune system studies sent to Cincinnati and all of those came back in the normal ranges of a healthy child as well. He is still 100% donor :) speaking of his donor....we haven't heard anything since December but colts doctor said a lot of young male donors are in the service and do not receive their letters until they come back from deployment. Colt also got his first 2 vaccines last month. He had no side effects from the shots, thank god! The doctor tried to draw labs today to send off and see if his immune system mounted a response to the vaccines BUT colt is a very hard stick. So after 3 hours of searching for a vein, his doctors and nurses decided to schedule him to be sedated next week and thy will do his labs like that. Apparently, chemo can cause his veins to be extremely small ad short, making it difficult to draw blood from. Like the poor kid hasn't been through enough hell, he now has to be tortured with horrible blood draws because of his dang tiny veins!!! But colt is a tough cookie and I think it hurts me more to watch him scream and cry. Thank you to everyone who continues to pray for our sweet boy :)

One year ago...

Around this time last year we were preparing to be admitted to the BMT unit for Colt's transplant. In some ways this year has just flown by and it seems like a blur, but in other ways it has felt as though time stood still. My family and myself will be forever grateful to Colts donor, his doctors, & nurses that helped save his life, and of course god. This experience has made me a much stronger and thankful human being. I give thanks everyday that I have my precious little boy. As I sat down to update the blog, I checked my Facebook page and saw another little boy lost his battle to histio....my heart just breaks for his family. Here is his blog link...be prepared to shed some tears. Colt had his check up at TCH last week and we got nothing but wonderful news :) He had some labs sent to Cincinnati last month that measure how strong his new immune system is working. The test showed that his new immune system is in the normal ranges of a healthy child. The doctor did say it was a the lower end of normal, but that it was in the normal ranges and with time he will be at the higher end of normal. In July Colt will get his annual test done to see how his body has handled all the chemo and steroids. He will also get his first vaccination then too. As most of you know, my brother got married in Aruba last month and that was our first BIG outing with Colt! I was very nervous about germs and how Colt would react to being out of his little "bubble," but he did extremely well. We flew first class (per dr recommendation), and he did wonderful on the plane. When we got to the resort in Aruba I was very well surprised at how clean everything was (thank goodness). I did of course lysol and take wipes everywhere we went. It was very nice to relax and get away from technology for a few days. When you are in isolation for a year and then get to all of the sudden come out of our little saftey zone, its a little hard to handle....I think about germs A LOT, but Im getting better. Overall, it was an awesome trip and I'm so glad I got to witness my brother get married. Colt had his first transplant on June 1, 2011 & his second transplant on July 3, 2011. We plan to celebrate both dates by having a one year post transplant party at the end of June. So many people have supported us through this journey and we feel we should thank them and give them an oppourtinity to finally see Colt :) I also submitted the necessary paperwork to get some information on Colt's donor....I'm crossing my fingers he is willing to release his information. Thank you to everyone who has supported us! Words cannot express how thankful we are to everyone.

A slideshow I put together of Colt's transplant journey

Clinic appt

Yesterday Colt and I went to TCH for his monthly clinic visits. They drew labs and we met with his doctor and nurse practitioner. They both were amazed at how well Colt is doing and loved seeing him walk all over the clinic. His labs were all wonderful, except his HGB was down a tad. They think his HGB is down because the medication he is on (bactrim) can cause counts to go down. To be extra cautious they ran some test to make sure it is the bactrim causing his HGB to be a little low. We should have the test back by next week. They reassured me it is common with BMT kids to have a lower than normal HGB level and if it gets below 10 they will give him a medication called Darbe to boost the level. His doctor also said they will start immunizations in June....scary thought since his 2 month immunizations "set off" his HLH, but they said they will monitor him closely and are confident he will do well. He continues to hold strong at 100% donor cells :) we discussed isolation restrictions and both the nurse practitioner and his BMT doctor have lifted most of his restrictions. His immune studies have all come back great and he no longer needs IVIG infusions. Of course it's common sense to stay away from sick people and large crowds and they know how crazy I am with hand sanitizer and disinfecting wipes. They also gave me the go ahead to return to work in august if I'm ready. Obviously Colt cannot be put in daycare, so that would mean we would have to hire a nanny to come to our home. Some days I'm really ready to go back to work, other days not so much.
We are very thankful Colt is doing so well and we hope he continues down this path!