Speech update

Colt's speech therapist came today and she spent a good amount of time educating me on speech apraxia and how I can help colt. Nancy Kaufman is the apraxia guru and is known world wide for her methods. Part of her "program" starts with teaching word approximations. So for kids with speech apraxia, breaking down the words to the simplest form is where to start. Colts therapist gave me some nancy Kaufman cards that we will practice with him several times a day. The cards are pictures of everyday things/people. For example: one card has a cow and I say "moo moo" to colt and try to get him to say the same thing. The goal is to eventually have him see the cards and automatically know what to say without being cued. We have to start small and work our way up to the proper pronunciation of the word. But for now we will work on word approximations with colt. I tried the flash cards this afternoon with colt and he got easily frustrated, which is to be expected. He gets a reward if he says the word approximation for the card and I think once he figures out he gets rewarded, he will be more willing to cooperate. I was reading on another speech apraxia moms blog and she explained it very well- we teach our kids sign language and we don't expect a 2 year old to sign the sign perfectly. We learn what the sign means for them and its good enough. So, how can we expect a 2 year old with speech apraxia to say a word correctly right away? We can't, we have to start small ( word approximations). I know colt has an extremely challenging road ahead, but we will not give up and will do whatever it takes to get colt to be able to communicate. It is very hard to watch your child struggle with something that is supposed to come so natural. I question why colt, considering he has struggled enough in his life with having had 3 bone marrow transplants, but questioning why gets us no where. God gives his toughest battles to his strongest soldiers, right!!! Colt has shown me that happiness does not come from how smart you are or if you can talk or not. Anyone that has ever come in contact with colt will tell you he is the happiest kid they have ever been around. So instead of complaining about yet another struggle colt is facing, I will be thankful he is alive and healthy! I'm thankful he can give the best bear hugs ever !!! I will try and upload a video of colt practicing his flash cards to help document his progress. Thank you for all your prayers for my sweet angel :) Natalie

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!

One Year Ago Today....

One year ago today Colt got his first fever. As any new parent would think, he probably is teething or he has a little cold, but only time would tell what the real story was. He got his first fever over the weekend and it started as a low grade fever. By Monday he still had a fever and Tylenol wasnt doing much to bring it down, so I decided to take him to the pedi. They examined him and just thought he probably had a viral infection, but said to call back if he continues to be lathargic. By Tuesday he was extremely lathargic and not wanting to eat...off to the pedi we went. The pedi took a blood sample and within 10 minutes it was back. The blood sample showed extremely low platelets and low counts. She told us to immediately take him to Texas Children's Hospital. The hubby and I knew something had to be majorly wrong if they are telling us to take him to TCH when there is the local hospital just a few minutes away. When we got to TCH we had to wait in the ER for about 2 hours until I decided to throw a fit and demand we be seen ASAP (his fever just kept climbing). We finally get taken back to a "room" and they try to get an IV started, but cannot find a vein. It is so hard to watch your baby scream for what seems like hours while they are holding him down and poking him anywhere they think they can find a vein. Once they get the IV started and labs drawn the ER doctor comes in and tells us that they think he could possibly have leukemia.... SAY WHAT??? Not my child! They send us off to have many scans done and they find that Colt's liver and spleen are EXTREMELY enlarged and that is probably why he always would scream when he would eat. At this point we are just in shock of what the doctors are telling us and I was just numb to everything. You dont have time to think about what is happening at this point. They get us to a room on the PICU after midnight. The next day we probably had about 30 different kinds of doctors come in and ask us questions and examine Colt. Dr. Allen and Dr. McClain who are some of the top HLH specialist in the country came in on February 2nd to talk to us about HLH. That is when I first heard that nasty word! They said the only way to tell between leukemia and HLH is to do a bone marrow aspiration, but Colt's platelets were so low that it was too dangerous to do.....did I mention there was a platelet shortage so Colt couldn't get a transfusion of platelets unless he needed a life saving procedure. BUT Dr. Allen and Dr. McClain explained that HLH and leukemia are treated the same way and the key to survival is early intervention, they were starting treatment TODAY. Colt's treatment consisted of a chemotherapy called Etoposide and high, high doses of steroids (dexamethasone). The dexamethasone is what made him get so puffy and it makes you extremely irritable and not be able to sleep (ya, just what I wanted to hear). Colt's treatment protocol would last 8 weeks and then the plan was to send him to transplant as soon as possible after the 8 weeks.
 Late in the day on February 2nd Colt got a platelet transfusion after the doctors demanded he needed platelets (I think his were 5). The operating room was full so the doctors came to his room and did the bone marrow aspiration, of course we had to leave the room. They sent his bone marrow off to several labs to be tested. On February 3, 2011, Dr. McClain and Dr. Allen came to talk to us again and let us know the preliminary results came back that he has HLH. That was very hard to swallow. They told us that it would be at least a week before we got the results from cincinatti, but he was pretty certain it was HLH. They then proceeded to tell us that the survival rate was 50%.....that sent me over the edge. How would you like someone to tell you that your child has a 50% chance at life??? They filled our heads with a bunch of medical terms that I had no clue what they were talking about. So what do you think the natural thing to do after they leave......GOOGLE. Well, that was a bad idea. I could only find horror stories and nothing positive about HLH. In just one year since Colt was diagnosed,the HLH family has really come together and only wished they would have been there when Colt was first diagnosed. HLH can be beat if it is caught early and you have doctors that are experiend with HLH.
So Colt spend about 4 weeks in the hospital and was discharged. We went to the cancer clinic at TCH once a week for outpatient treatment. We had 3 hospital stays in between March and May for HLH flares. In May 2011 we were given the wonderful news that a bone marrow donor match had been made and Colt would be admitted May 25th for his conditioning regimen for his transplant. Colt recived his first transplant on June 1, 2011. We learned at the end of June that he only had 20% donor cells and they would like him to be closer to 100% donor cells. Colt had a break in his conditioning because he had a bad reaction to campath, so the doctors thought that maybe that break in conditioning caused him to not have enough of his own cells "killed" off to make room for the donor cells. Transplant number 2 was given on July 3, 2011 (same donor). After 60 days in the hospital we got the devastating news that Colt still had only 205 donor cells and his marrow was very empty. The decision was made that we would be dischared and go home for awhile and come back in a month or so for transplant number 3. Colts labs were all stable at this point. HLH can be kept at bay with donor cells as low as 20%, but that leaves no wiggle room if he starts to lose a little bit of his engraftment. We continued to go to clinc 3 times a week and his engraftement studies were sent off weekly (he hovered around 20 to 28% donor cells). At the end of August, Colts BMT doctor made the decision to give Colt another bag of cells without the chemo. It technically wasnt a DLI because it was a full bag of cells. So we were admitted for one day for Colt to recieve another bag of cells ( we got a total of 6 bags from his donor). He had no complications and we were sent home the same evening. We go to clinic the following week and his engraftment studies are drawn....they come back 40% donor cells!!! Within about 6 weeks Colt made it to 100% donor cells :) That was the best news EVER. Colt continues to hold onto 100% donor cells. We are so thankful for his donor and we keep in touch with him often.

Who would have thought that a little fever would lead us down the path it did. I am forever grateful for all the people that have supported us and helped us through the difficult times. Our life will never be the same again, and I'm ok with that. This journey has made me a much better person, mom, and wife. Don't get me wrong, it was no means EASY, but I think god gives certain people these challenges because he knows who can handle them. I have learned what is important in life and how short life can be. I hope this year brings great things to our family and that we can get back on track to some sense of normalcy.

P.S. that was the short version of the events that have transpired over the last year. If you are an HLH parent wanting more details of colt's journey you can go to http://www.coltfuhrman.com/

Clinic Visit

We went to TCH today for Colt's clinic visit and blood work. His labs all look pretty good...they have been higher, but the nurse practicioner said one of the medications he is on (Bactrim) can cause his counts to be lower. He has been off his steroids for 3 weeks now and we have noticed that he is starting to get a rash on his head and face so we are going to try some topical cream to clear it up. If the cream doesnt work, we will have to put him back on steroids ...yuck! Steroids keep his immune system suppressed, which keeps his body from mounting an act agaisnt his donor cells and also keeps his donor cells from attacking his skin (GVHD). Colt is down to taking just one medication now- Bactrim, which he will continue to take until a year post transplant. I'm so happy he continues to take steps in the right direction! Just 6 short months ago I could have never imagined for my family to be heading in the direction toward some sense of normalcy. Since Colt was 14 weeks old we have been basically on isolation and not been able to do much except go to the hospital and have a few visitors over here and there. Although some of his isolation restrictions have been lifted, we still have to be very cautious, as it is still cold and flu season.

On another note, Colt has been walking all over the place! This is a huge developmental milestone for any one year old, but since Colt laid in a bed for 5months this is HUGE for him :) We are working on talking with him and using his words. He says mama, dada, bye, and TY TY (Uncle Tyler). I know with time he will be my little chatter box.

GO TEAM COLT!!!

Happy New Year!

As most of you already know, 2011 was not the best year for my family! I am really looking forward to 2012 and hopeful god has much better things in store for us. Colt has been busy trying to learn to walk independently and he takes a few steps by himself and then gets scared. It's amazing to think about how well he is doing considering the hell he has been through. His doctors have said he can go out in public when it's not busy out and make sure he isn't around anyone who is sick or been sick recently. His new immune system has to grow and learn to fight off germs....it's a slow process. His doctors also stopped his steroids last week, which makes me excited and nervous all at the same time. The steroids helped keep his donor cells suppressed so they won't attack his body, but it is nice that he is sleeping better now that he isn't hyped up on steroids. So we are just taking it one day at a time and enjoying the little bit of freedom we have ;)

We also booked our trip o Aruba this week! My brother Tyler and soon to be SIL are getting married there April 28, 2012. Many people have asked if we are taking Colt and the answer is yes. Colts doctors have reassured me that Aruba is "clean" enough to take colt as long as we stay at the resort and sanitize everything (which I'm an expert at). They also recommended we fly first class(oh darn haha) and that colt wear a mask on the plane. We will Also have to keep colt in the shade and wear lots of sunscreen and protective clothing. I'm anxious about taking colt out of the country but very excited too.

Today chuck and myself went to visit with dr. Witz,a fertility doctor. I had major complications when giving birth to Colt (almost bled to death) so my OB highly recommended me not to carry anymore children. Then, there is the genetic mutation that chuck and I carry. Soooo we decided that a surrogate would be our best option and then dr witz's team of lab specialist would test the embryo for HLH....they would only transfer healthy embryos. We did not get the news we wanted to hear today....insurance will NOT cover anything! This means we are looking at atleast $50,000 and that's a lot of money!!!! Colt brings so much joy to my life I cannot imagine not having a sibling for him, so we have a lot if thinking to do. Chuck and I have thought about adoption, but just aren't sure if that's right for our family. With all that being said, thank to everyone who has supported us and prayed for us this past year. I know everything will work out and 2012 is going to be a great year!