Calming Down

Things have calmed down ALOT the last two weeks. After the crazy month before, it has been nice but strange too. Sometimes I don't know what to do with myself when things are calm and quiet! The kids are enjoying summer. It is nice to just relax a little bit and just enjoy life.

Jared is doing so well right now! He has adjusted beautifully to his hearing aids and is so full of life right now! He is constantly making us laugh at the silly things he says and with the cute expressions on his face. His walking is getting better and better and he is so proud of this new skill he has acquired. Sometimes when he is walking, he comes up to me and says, "I Walking!", with his face just lit up with joy. He is such a happy little soul. He also loves to swing and would swing all day if I would push him all day! He loves to be pushed up high and he always yells, "I so high!!!!!!" He is just blooming right now. He is speaking more, walking more and being silly more. Jeff and I look at him all of the time and are just so happy to see HIM so happy! We are so blessed to have him in our lives.

We got the results back from Jared's bone marrow tests and everything looks normal. That is a big relief, but that means that it is the medicine that is causing his ANC to be so low all of the time. At this point the hematologist wants to just forget about it for awhile and see how he does. If he starts having a lot of infections then we will reopen the issue. So, for now, we let him be as normal of a kid as possible and keep a watchful eye for any sign of infection. We are praying that he will continue to handle the low counts as well as he has thus far!

The last month was a hard one. I was so stressed about all that was going on and worried about Jared. Tyler was struggling again with his anxiety and Alyssa, as always, just needed some attention. I was exhausted and overwhelmed. Now that things have calmed down I am doing great. I love my kids! They are beautiful, wonderful kids! And they are perfect just the way they are! Although Jared does have obvious problems, he radiates happiness and joy. Perfect strangers are enchanted by him and he just makes you smile when he is around. People come up to me all of the time to just tell me how cute and sweet he is. If he can make people smile and make them feel happy by just being near him, then he has such a wonderful purpose in life! I am grateful for all that he is teaching me.

Life is good!

Pictures from the week

My silly kids at the grocery store.
Swinging!

Rachel and I took the kids to Red Butte Gardens on Friday. It was the one day that it didn't rain last week! We had a great time. Notice little Benny holding Jared's hand. He is so sweet with Jared (most of the time) and Rachel and I think that they will be best little friends!

My handsome boys!

Beautiful Alyssa hanging out on a lizard.

Katie, Alyssa, Jared and Tyler at the Children's Garden.

The kids loved seeing this mother duck and her babies!

Jared, Tyler and Brian (Jared's OT) Tyler was a great addition to therapy. Jared would do so much more when he saw his brother doing it!

We're Singing in the Rain!

Wow, what a wet few weeks we have been having. It just keeps coming and coming! It's been so nice to see everything so green and lush, but it will be nice to send the kids back outside again!

Jared has his hearing aids! We got them on Friday. He is actually doing extremely well with them! I am kind of amazed! He has been wearing them full time, whenever he is awake, since we got them! They don't seem to bother him much and I am starting to get the hang of putting the ear molds in. I wish that he could tell me how different it is for him with them in, but he can't quite tell me that yet. He looks so cute! It really is amazing at how he just adapts to whatever is thrown at him. Hopefully I can adapt as easily as he does as I add hearing aid stuff to his already long list of stuff. The first morning that he had them we were heading out early to a movie with HopeKids. I needed a check list to keep track of everything that I need to head out for the day, just for Jared!

Hearing aids tested, batteries tested, hearing aids placed, glasses on, diaper changed, clothes on, morning meds. drawn up, braces on feet, shoes on feet, feeding supplies packed and ready for the day, have hearing aid supplies in bag, have froggy and apple juice packed (Jared can't leave the house without these). OK, ready to go! Oh wait, the kids! Are Tyler and Alyssa ready to go? Wait, I need clothes on! I can't go in my pajamas!

Yep, its a little crazy but that's life! We'll get it all figured out and then we will set a record at getting out the door in the morning!

I keep looking at Jared in a new way. With his hearing aids, glasses, and AFO's (braces for his feet), and then his feeding tube, he looks handicapped. I know that he is, but these things have made everything more visual. His chronic health issues were invisible to most people, but these other issues are not. Right now everyone thinks that he looks so cute, but I know that it will get harder the older he gets. He is "different". And he always will be. My heart already aches, knowing that there will be times when it is so hard for him. I just love him so much and I don't want him to hurt. But, maybe I am worrying needlessly. He is one strong little spirit, and he will probably handle everything with grace and dignity. What would I do without my children who teach me so much?

I was able to meet with the school district and the director of the School for the Deaf and Blind this week. Jared qualifies and has been accepted to the special preschool that is for children with hearing loss. I have heard wonderful things about this program and I think that it is going to be wonderful for Jared! So, next fall, he will be off to preschool four days a week for 4 hours! A bus will pick him up at the door and bring him home. I think that he will love it, but I think that both of us are going to go through withdrawals for the first few weeks. It will be so strange to send him off each day, but I know that he needs this. Tyler and Alyssa only went to preschool for one year, right before starting kindergarten, because I didn't want them to be gone from me so soon. It is difficult to make this decision, but Jared needs more than I can give him at home. He will LOVE being with other kids. It will be good for both of us, but what am I going to do when he is gone? (Don't worry, I have a list) :)

Living in my Car

I feel like I have been living in my car the last few weeks. Unfortunately my car looks like it too! It was another busy week. A lot of appointments, a lot of driving, just a lot going on.

Monday Jared had transplant clinic. Luckily his wonderful little kidney is working fabulously still! Hopefully we can keep that up for a LONG time! His white counts are still low and he has BK virus in his urine again, so we are watching those things carefully.

Tuesday, the kids and I along with my sister, Rachel and her kids, helped out the Intermountain donor Services by manning their booth at a health fair. We answered questions and tried to register people to be organ donors. Unfortunately the weather wasn't very cooperative, but it was still fun and felt good to be able to help out a little bit.

Wednesday, Jared had an appointment with his Medical Physical Rehabilitation doctor. She is very happy with how he is doing. We are just going to watch his walking carefully over the next few months to make sure that he doesn't develop any bad habits. Tyler and Alyssa had to go up with us so we went to a fun park afterward and had a picnic. We had a nice afternoon feeding the ducks and riding on a few rides.

Thursday Jared and I headed back up to the hospital for the third time this week for his bone marrow aspirate and biopsy. It was a very long afternoon but Jared, once again, amazed me at how strong and sweet he is. You would think that with all of the rough stuff that he has to go through at the hospital that he would panic when he knew that we were headed there again. Not so! When we get on the road that takes us toward the freeway he always asks, "going to hospital?" I answer in the affirmative and he just talks happily about going to the hospital. When he plays with his cars I ask him where he is going and he says, "Cars going to hospital". What three year old drives his cars to the hospital? :) He was so happy and sweet on Thursday and everyone thought that he was adorable. We went to hematology first for a check-up and they put his IV in then and took a blood sample. Of course he didn't like getting the IV placed, but they got it in first try (that always makes for a better day at the hospital!) and then he was as happy as before once they were finished. We then went down to the rapid treatment unit and as soon as we walked into our room he wanted to cuddle with me on the bed while he watched TV. He knows that something is coming, but he is usually fine as long as we are snuggled on the bed together. When we walked back into the procedure room, he was fascinated by all of the equipment and after getting his medicine through his IV, he fell asleep in my arms. The procedure didn't take long and he actually woke up about the best that he ever has following a sedation. He had two bandages on his lower back where they harvested the bone marrow which we removed the next day. He has been a little sore if someone touches back there but hasn't seemed to be too uncomfortable. Things went smoothly and he was a trooper. We should have the results by next Tuesday.

Friday was probably one of Jared's best days ever. HopeKids was invited to attend an airshow at Hill Air force Base. Jared has always loved planes and he had so much fun! We were worried that it would be cancelled because of the weather but luckily the rain stayed south of the base and so the show was on. My parents were able to come with the kids and I and it was fun to spend the afternoon with them. We saw the Blue Falcons squadron. They were amazing! It was so fascinating watching them fly so close together. Jared loved every minute of the show and had his little airplane in his hand the entire time. He would fly his plane like the jets were flying and just laughed and smiled the whole time. Tyler and Alyssa enjoyed it too. It was a long afternoon and we were driving all day again, but it was worth it. We had a great time!

Jared LOVED flying his airplane the same way that the jets were flying. If they came from behind us, then Jared's plane came from behind.

Alyssa didn't like the noise even with the earplugs in!

This is Mark. He is a crew member of a huge cargo plane that we got to see. He was really nice and spent a long time visiting with Jared and I as we sat on the passenger seats inside the plane. He even gave Jared one of his badges off of his uniform!