Update on a busy week

Today was the last day of school! I can't believe that Tyler and Alyssa are no longer 4th and 2nd graders! It is going by too quickly. I keep telling them to stop growing up so fast but they keep on insisting that they can't help it. Whatever! They both had a very good year. They are both so smart and never get into trouble. I feel very blessed that they are so well behaved and that school isn't hard for them. Tyler has loved his teacher this year and will really miss him. Mr. Lewis was just what Tyler needed. He was so kind, positive and encouraging. It was such a relief to know that Tyler was in such good hands all year. Alyssa always LOVES school! She is such the little social butterfly and always has many friends. One of her favorite things that she learned about this year were rocks. She is an AVID rock collector and can't help but bring home a rock or two (or ten) from every outing that we take. She is a joy to have around.

Jared and I have once again been very busy with appointments this week. On Tuesday we saw the geneticist. He is very intrigued by all of Jared's unique symptoms but has no idea what he has. He said that he definitely has some sort of genetic something, but what it is, he doesn't know. He wants to do some more genetic blood testing, but it has to be pre-approved by the insurance companies because it is so expensive. So they are writing our insurance company and we will see what they will say. This test is the best that they have available right now, but it still only finds something 10% of the time. There are just too many genetic parts of the human body to be able to look at every piece of every chromosome in every gene of the body. So, unless he discovers something else, we will see him again in 2 years. I was really hoping that the geneticist would be able to put all of the pieces together, but I knew that it was likely that he would not. Jared is just his unique little self! We will just have to be patient and take each day at a time with him, because we have no idea what the future will bring!

After the appointment with the geneticist we went and picked up Jared's new glasses. It is taking him a while to get used to them, but he is actually doing better than I thought that he would. He looks so cute in them! I think that they make him look older. Hopefully he'll be completely adjusted to them in two weeks when we get his hearing aids!

On Thursday we saw the hematologist. We are in the process of getting a bone marrow aspirate and biopsy scheduled. The doctor still thinks that his low counts are being caused by his medication, but the only way to know for sure is by looking at the bone marrow. Luckily Jared has seemed to be remarkably resilient despite his low counts as he has yet to acquire an infection, but it still just makes me nervous waiting around for him to get sick! If the tests come back confirming that the medicine is causing it, then we will probably just watch him closely unless he starts to get a lot of infections. He will then need to be put on a different anti-rejection med. Unfortunately, the only one left that he hasn't tried yet has some nasty side effects. If the test shows something else, well, we will think about that if we have to. We will probably be doing these tests in the next two weeks. So, he'll have to be sedated again! Crazy!

Today we went to the audiologist and he had his molds made for his hearing aids. He wasn't to0 thrilled by the process, but he was still really good about it. They shoot this foam stuff into his ear and then wait for it to harden. He was very happy when it was all done. We picked out colors for his hearing aid and insert and they will be ready to fit in two weeks. I am very anxious to see how he does once we get him hearing better!

A Memorable Memorial Day!

This is a Memorial Day that we will never forget! Jared finally decided that he would try walking without the walker and he did AWESOME! We have waited so long for this day and we are soooooo proud of our tough, little man! Check out the video! He is amazing! It took 3 1/2 years, but seeing the look of pride on his little face was worth every day. I love you Jared! You are my hero!

Three in One

Yesterday morning started out bright and early for Jared and I. We left the house at 6:00 AM so that we could be at the hospital by 6:45. Jared was having his G-tube replaced and the old one had to be snagged so to endoscopy we went. Because he was going to be under general anesthesia, several other doctors wanted to do a few tests while he was out. The eye doctor did an ERG test, which looked normal, and the audiologist wanted to do a repeat ABR to verify the results from the test last week. Those results were the same in the left ear, but showed a little better in the right ear, but we are going to proceed with bilateral hearing aids. He also needed to be cathed for a urinary sample (since he refuses to give us a sample the regular way). All of this took several hours to complete but we did it!

I was so grateful that all of the doctors were willing to work together to get all of these things done at once! And I was amazed that we were able to actually coordinate everything in just a matter of a couple of days. We were able to get a lot of information yesterday that should be helpful for the geneticist next week. Jared was even cooperative enough after wards to get his CT scan of his ear done too! Amazing! It was a long but successful morning!

Since Jared was recovering so well we had time to stop upstairs in the ICS unit to say "hi" to a couple of the nurses that took care of Jared following his transplant. It was so nice to see Erika and Dave. Jared was so well taken care of there and it always nice to be able to see them again. We have been so blessed by the care that Jared has received by so many!

Things are looking really interesting as we get more information about our Jared. We are noticing that his left side in more symptomatic. His left ear has alot more hearing loss. When the eye test was done, the doctor said that everything tested in the normal range, however, the left eye was not as clear as the right (whatever that means). It was his left kidney that was completely missing and his left foot was more severely clubbed. Interesting! We'll see what the geneticist has to say about all of this!

Unfortunately we got more disappointing news this week. We have still been struggling with Jared's white count, specifically his ANC. 6 weeks ago his ANC was low again so we did another series of GCSF shots. Normally he has really responded well to these shots, however when we retested one week later his counts were actually worse then they were before the shots! So, we repeated the shots again but at twice the strength. His labs this weeks showed no change! Arghhhh! The nephrologists have no idea what is going on so we are seeing the hematologist again next week. Hopefully he will have some ideas for us. So, we are as usual, trying to keep Jared isolated as much as possible.

It has been quite the week! I am exhausted and Jared is tired of all things medical, but he is amazing and seems to just put up with it all. The timing of all of these new developments have been perfect though. I scheduled the appointment with genetics eight months ago and was frustrated that we had to wait so long to get in, but now, we have so much more information than we did even one month ago! Things have seemed to fall into place at the perfect time and hopefully with this new information we will be able to put all of these pieces together next week!

Long Day

We had a busy day at the hospital yesterday. It's always nice to be able to fit in several things on one visit but it makes for a long, tiring day.

-We started the day off at the lab getting Jared's normal labs.

-Headed up to Opthamology where we waited an hour and a half to get his eyes dilated.

-While we waited for the drops to do their thing, we ran back down stairs to his ENT follow-up appt. The ENT confirmed the results of the hearing test and ordered an EKG and a CT scan to finish up the work-up for the hearing loss and gave us the order for hearing aids.

-We then ran back up to the eye doctor who's office was closed for 30 mins. for lunch. Lunch? Who needs lunch?

-Ran back down to Cardiology to have an EKG done. Jared was less than impressed but we were finally able to get a good reading.

-Back up to Opthamology. The results: Jared needs glasses! He is having a hard time keeping his eyes centered and is a little far sighted so the doctor wants to try glasses before we opt for surgery. He also wants to run another test to check for an eye condition that can come with hearing loss. So, while Jared is sedated for his g-tube replacement on Friday, they are also going to do the eye test that he needs. At least we were able to combine them!

-Ran to the eye center next door to order his glasses. He was also less than impressed about trying on glasses. Getting him to wear his new glasses next week should be really interesting!

-Looked at watch. 2:15! How did it get to be that late already! I have to be home at 3:00 to get Alyssa to a rehearsal!

-Ran back to the car deciding that there was no time for the CT scan today.

-Feeling very tired and light headed. Food! I need food! Inhaled Arby's while driving home while Jared, exhausted, is sound asleep in the back seat.

-No gas? How did that happen? Stop to fill up car before being stranded at side of road. That would not be a good finish to the day.

-Pulled into drive way at 3:05. Grabbed Alyssa and off we went to her 3 hour rehearsal!

-Arrived home at 7:30 hungry and tired to a great surprise. Tyler and Lacee had made dinner! Homemade pizzas that were delicious! Thanks my Mr. T for letting me collapse in my chair while eating yummy pizza!

It was a long day. I am still feeling really overwhelmed with hearing aids and now glasses. How in the world am I going to get Jared to keep hearing aids and glasses on! We are going to be having some fun times over the next few weeks! (ha, ha) We see the geneticist next week. Hopefully he'll be able to put all of these pieces together so we have a better idea of what we are dealing with.

Another Piece to the Puzzle

Jared had his sedated hearing test today. The results were a little disappointing. His left ear has moderate to severe hearing loss and his right ear has moderate to mild hearing loss. He will be needing hearing aides. I had mentally prepared myself for the fact that this could be the result but I guess deep inside I was still hoping that it wouldn't be. I was especially disappointed that the right ear is involved as well. I wasn't expecting that. So, we are on to more testing.

We have to follow up with the ENT who will probably order MRI/CT scans to rule out any medical reason for the hearing loss. And then we will see the geneticist to see if he can piece all of these symptoms together for us. Luckily I already had an appt. scheduled at the end of the month. That worked out conveniently. Hopefully he and the ENT will be able to figure out what has caused the hearing loss and what to expect in the future. It will be very interesting to see what the geneticist thinks, because kidney issues and hearing issues can go hand in hand and there are several syndromes that have the two together. Unfortunately, in these syndromes, the hearing loss is progressive so if Jared did have something like this then his hearing will get progressively worse.

My sweet Jared is such an amazing little guy. He already has so much to deal with and so it breaks my heart to know that he will have yet another challenge that he will be facing. Something else that will make him even more unique. But, I also know that he is one tough little spirit that will be able to handle anything that is thrown at him. I love him so much and I am so grateful that he is alive and brightening our days with his smiles and giggles.

We will find out more information in the next few weeks. All of these pieces just might come together soon. Whatever the whole picture turns out to be, it will be a masterpiece. It will be a masterpiece because it will give us a clearer picture of the miracle that Jared is.

Sacrifice

I have been thinking a lot about what sacrifice truly means the last few days. My life has been so greatly blessed by the sacrifice of others and sometimes my mind can't completely wrap itself around what all of this means, but I am working on it.

A few days ago my Brother and his wife were able to adopt their second child. He is beautiful and perfect and they are so happy. They have been so blessed by their two beautiful children and their children are blessed to have them as parents. The birth mom chose them early on and has involved them in all of the aspects of this pregnancy. They were even there when the baby was born. She was insistent that they were there to witness the birth of THEIR son. What an amazing, strong, woman she is. She loved this baby so much that she was willing to give him to a family that would be able to provide for him in a way that she would not be able to. What a sacrifice! When it actually came time to sign the papers she struggled. I can't imagine how difficult a decision that must be. But despite the pain that this decision was causing her, she still wanted happiness for this child of hers, so she gave him to Ben and Lori. She gave her child to parents who longed for children but could not bare their own. What an amazing example of sacrifice.

A year and a half ago, Jared received the gift of a kidney. He would have eventually died without this gift and life would be so much more difficult. A family that I do not know and who doesn't know us made the decision to donate their loved one's organs. When an organ is donated, the donor's heart still has to be beating in order for the organs to be transplanted. This means that the families have less time to say good bye to their loved ones. They must say goodbye while the heart is still beating and the body is still warm. I can't imagine the grief that they must have felt and how easy it would have been to just be swallowed up in the sorrow and not think of others. But they didn't. They wanted their loss to create life for others. This too is an incredible example of sacrifice. Because of their sacrifice I have a beautiful, healthy, happy son who is growing and thriving! I couldn't save my son, so this family gave us something that we couldn't give him ourselves.

The greatest sacrifice of all was the sacrifice that Christ made for all of us. He was perfect! He was God's son! He did nothing to warrant the pain and suffering that he suffered. But he sacrificed his life for us, because without him, we would never be able to return to our Heavenly Father's presence. I can't imagine the grief that our Heavenly Father must have felt as he watched his son suffer. I can't imagine the pain that Christ felt. It is hard to even comprehend the love that they must feel for all of us, if they were willing to go through those experiences for us.

A friend told me that maybe we have experiences like these so that we can better understand the true sacrifice that Christ made for us. Life is hard. It is hard to feel so much sadness and helplessness when there are problems that we cannot solve ourselves. And it is times like these that cause us to pray and hope and trust that God knows and understands. And he does! He just wants us to trust him and have faith that these trials will be for our own good. And often times our pleas for help are answered by the sacrifice of others. I am so very grateful for those who have sacrificed for me and for my family. They have given me gifts that have blessed and enriched my life and I pray that I will be able to be an answer to other's prayers in return.