Day 2 and Day 3

Things are still progressing right along. On Tuesday morning Jared was a little less cooperative at his first feeding time, but calmed down about half way through it and then was great the rest of the day. He was getting better with the applesauce and they started giving him milk to drink. He did great with the milk and tolerated it better than we thought.

He kept on progressing today. He more than doubled his intake from yesterday with both the solids and the milk and we got to skip two cans of formula today! It does take all day to get all of that in but we are making progress. He is hardly gagging at all with the applesauce and is slowly getting better at drinking from a cup. At this point he is always fed by the therapist. Kids that have poor self-feeding skills can get so frustrated with just the act of eating that they take that away so that they can just concentrate on swallowing. Eventually he'll be able to do it himself. Tomorrow they are going to start adding some carnation instant breakfast to his milk and are going to add some pureed fruit to his applesauce. Its a slow process but he is improving each day! He has been extremely cooperative though and the doctor said that he likes these Utah boys because they are so cooperative! Yeah Jared!

The Ronald McDonald house is wonderful. People come in and prepare meals for us each night and they have therapy dogs come in almost every evening. Jared has LOVED playing with the dogs. Everyone is very friendly and Jared is making friends with everyone quickly. Tonight he climbed up on the couch and sat in between a nice couple and sat with them for almost an hour watching TV. They are so cute with him and he has made himself quite at home. There are so many good people in this world! Jared's journey has shown me this in so many ways!

Leaving on a Jet Plane

Jared excited to be on an airplane!

Actually we have already left. Jared and I are in Hershey, Pennsylvania! We left yesterday and after one long flight and 2 hours of driving we find ourselves in the Ronald McDonald House in Hershey. Things fell into place at the last minute and we decided to go for it! Last week was crazy trying to get ready to leave for a month, but we did it and we are here!

Jared had his first day at the feeding clinic today and it was an absolute miracle! I would not have believed it if I hadn't of seen it with my own eyes! They have some sort of magic here because by the end of the day Jared was eating and swallowing yogurt and pudding and some applesauce! He had 8 different feeding sessions today. He has a session that is 15-20 minutes and then he gets to go play for a half an hour or so and then he does it again. At the first session he wiped everything that was put in or on his mouth off on his sleeve. He did this again for the second two sessions. By the fourth session the doctor gently held his head to keep him from wiping it off and he actually swallowed it! He ate a total of 4 oz. of solids today and drank 7 oz. of apple juice from a cup! I could not believe it!

Jared was amazing and such a trooper. He didn't even cry until the last session. By number eight he was tired and had had enough but he still kept at it even through the tears. Dr. Williams was so pleased with how he did and he exceeded all of our expectations! I am so excited to see how this progresses!

They have a totally different approach to teaching kids to eat. All of the other therapy that Jared has had so far has dealt with desensitization by touching their faces with food & playing with food. At this clinic they don't even bother with that. They just start feeding them. They are no nonsense in a very gentle, kind way. They are very positive and are constantly encouraging them. They have a sign in the hallway that says "Welcome to Our Kitchen, Where Eating is not Optional!" I am extremely impressed so far and thrilled that Jared had such a good first day. I know that we will have harder days as he realizes that this is what we are doing for the next four weeks, but I am feeling very optimistic.

Jared was so excited about our trip. Last week whenever he saw anyone, even the lab tech at the pharmacy, he would tell them that he was going on a trip in an airplane! He was so fun to watch and loved when the plane took off and was in the air. He is so fun and excited about so many things right now. It is fun watching him discover and experience so many new things and I am so grateful each and every day for his donor! Without his donor, he would not be experiencing all of these new and exciting things. Thank you!!!!

I'll keep posting updates on his progress. So far this trip is looking great!

March Madness

The last month has been busy!!!! It has been a good month. No one has been sick and we have had no trips in ambulances or stays in the hospital! Yeah!!! It may take me a few days to get caught up but here goes!

Tyler has had a stressful but good month. He has had a lot of big school projects going on this month and I think that I am as ready for summer break as much as he is! :) That said, he has done so well!

After doing well at the district science fair he continued on to the big regional science fair at BYU. It is a HUGE fair and is basically the state fair for Utah. He was so nervous but his two best friends were also attending and his wonderful teacher, Mr. L, was there. It turned out to be a great day! The judging was done in the morning and he came out of the judging feeling like he hadn't done a very good job. I kept trying to remind him that he should just feel proud of himself for making it this far.

The awards ceremony was nerve racking. And as all of the awards were announced, Tyler's name wasn't called. There were roughly 6-7 winners for 3rd, 2nd and 1st place in each category. Tyler's best friend Matt was one of the 1st place winners and at that point Tyler just broke down and started sobbing. I was trying so hard to console him and honestly didn't think that he had won anything. They then announced the grand prize winner for each category and when they got to the Life Science category they announced Tyler's name! He and I were both shocked! I was absolutely speechless as Tyler's countenance changed from utter despair to one of complete elation. He had the biggest smile on his face as he went up to receive his trophy and his $50 prize money. He and Matt were two happy boys as we walked through campus back to our car. They were both amazing and Matt's mom and I were so proud of them both! I can't tell you the relief that I felt. I was so happy for Tyler and greatly relieved that I hadn't messed up everything as Tyler and I worked on this first science fair project. He is now an automatic quarter finalist for the National 3M science competition. So, we have to get working on that now! :) Good Job my Tyler! I am so proud of You!

Tyler and Matt = Winners!!!

Tyler in shock after winning the Grand Prize.

Tyler and his project. Extractable DNA... Omega Egg vs. Plain Egg

Chelsie, A Friend, Tyler & Matt with the best teacher in the world. Thank You Mr. L.!!!

We are Home

Jared and his hospital buddy. Feeling much better!

Not feeling so good!

We are home! We got home yesterday afternoon and Jared and I were both so happy to be home. He had invasive Streptococcus Pneumoniae. It is a common bacteria that often causes ear infections and pneumonia but becomes invasive if it invades a normally sterile area, which in Jared's case was his blood. This bacteria also causes bacterial meningitis if it gets into the spinal fluid. I am so very grateful that we were able to get Jared in the hospital and treated so quickly because things could have gotten so much worse. I'm glad that his body spiked that high fever so quickly so that we knew that we needed to get him help immediately! If we had waited, the bacteria could have crossed the blood brain barrier and caused meningitis or could have started affecting his organs. We were so blessed that it turned out so well. He is doing awesome!

His nephrologist thinks that it might be best to just keep him home from pre-school and away from bugs for the next few weeks. There are so many nasty bugs around right now and he has been sick for months now and we just need to keep him healthy for awhile. I feel bad keeping him from pre-school because he loves it so much, but he has only been there 3 days in the last month because of illness anyway!

It has been a crazy month but we are so blessed to have us all home and healthy. Alyssa is doing pretty well. We think that she might still be having a few small seizures at night but nothing big and we will talk to the neurologist in a couple of weeks.

We woke up to a foot of snow this morning and it is still coming down! It has been such a dry winter that we almost forgot what snow looked like! Alyssa and her friend have already built a snowman and Tyler is going sledding with his friends later. It should be a nice day!

We are Home

Answers

We have answers today! Jared's blood tested positive for a type of bacteria that is very common and usually causes pneumonia. His body was shedding the bacteria into his blood and that is why he got so sick so fast. Luckily, the IV antibiotic that they started that night was a great one to treat this particular bug and that is why is doing so much better so quickly! As soon as the sensitivity tests come back showing that this antibiotic is the right one to treat it, we are out of here! They were hoping that the results would be back this afternoon so that we could go home tonight but it will be tomorrow morning. He'll be on oral antibiotics when we go home but we won't have to worry about keeping the IV ones once we are released. Yeah!

The sample that they took from his ear that has been draining for the last several weeks grew 2 different kinds of bacteria. No wonder why it has been bad for so long! The ENT came this morning and suctioned out all of the gunk so that the drops can actually get to where they need to be, so hopefully, that ear will get better now.

So, things are looking up. Jared has been so good and it has actually been really nice being able to spend some time with him alone without too many distractions. We've gotten a lot of snuggle time in! He is understanding more about what is going on and that has made it easier for both of us. He can understand now why we are doing different things and so I don't feel like I am holding him down to be tortured as much. As far as hospital stays go, this one hasn't been bad at all. We should be home tomorrow! Jared can't wait to see Daddy, Tyler and Alyssa!

The Fun Never Ends!

Well, the fun never ends at the our house. Jared was admitted into PCMC last night. He was great all day but at 6 pm last night he started acting like he wasn't feeling very well and felt like he was running a fever. We were at a HopeKids activity at the time and so as soon as we got home at 7 pm I took his temperature and it was 104.7!!!! He has never had a temperature that high before and he was not looking good at all. So we headed up to the ER. The whole drive up to the hospital I just couldn't help but laugh because the last few weeks have been so crazy! You either have to laugh or go crazy, so I decided to laugh! :)

The ER was packed when we got there and I was so worried that it would take forever to get him back and away from all of the germs, but apparently, if you are a transplant patient with a super high temperature and an elevated heart rate and respiratory rate you get red flagged and we were back in a room within minutes. There are some perks to being a transplant patient! :) They got an IV in him quickly and have sent out cultures of every body fluid that he has. We got up to a room at about 1 am and here we are!

They started IV antibiotics last night and he is doing so much better today. He has been fever free all afternoon and looks so much better. We are just waiting for the results from the cultures but his labs are looking good. Hopefully we'll have a better idea of what we are dealing with soon. I'm just so relieved to see him doing so much better. He was so miserable last night.

Jared is amazing. He is so strong and brave. We've had to put two IVs in already because the first one failed this morning and each time he was so good and would look at me with tears in his eyes and say, "I be happy mommy. I be happy". He has been such a trooper and handles all of this so well. I'm so grateful for this wonderful hospital and for the amazing people that work here. It truly is a special place and our home away from home. We have had all of our friends from transplant clinic stop by to visit and we know our way around. I remember the first day that I walked through these doors on the day that they transported Jared here when he was just a few days old. It was so scary and full of so many unknowns. So much of Jared's four years of life have been spent in these walls. PCMC has been an integral part of our lives and I feel so blessed that we have this amazing hospital full of amazing people that have helped our Jared in so many ways.

Well, time to get back to my Jer Bear. We are about to watch Space Buddies for the seventh time today! :) Hopefully we will have a good night and will know more tomorrow.