Dear Elijah Warriors,
Thank you so much for all you have done for us over these seven months of Elijah's life. During my pregnancy if someone had told me that we would be going through all of this, I think I would have had a nervous breakdown. God never gives us more then we can bear, and He has given Joel and me the strength to make it from day to day. We are so grateful for each other, grateful we have the other to share all these trials and joys. We have been SO blessed!! Elijah is so much fun to have around. He keeps us smiling and makes us laugh more often than cry. We love to watch him get excited about doing something new. His little mind is thrilled to be able to have a new skill.
Last month Elijah had some shots. These shots caused a lot of turmoil and
sleeplessness in the house. Joel and I were concerned about Elijah and thought that we should get him an infusion of Factor IX in case there was bleeding that we could not see. During the process of getting the infusion, Elijah developed a severe bruise on his hand/wrist. We were in Kansas City on business and had someone come and check Elijah.
Her immediate response to us was, "You need to take Elijah to the Emergency Room at Children's Mercy. This looks like Compartmental Syndrome."
Speaking of Emergency Rooms, did you know that they are now called "Emergency Departments"? No more ER, just ED. Anyway, I was not looking forward to heading back to the hospital that has so many hard memories. Aughhh!!! We learned all about Compartmental Syndrome.
The way we understand compartmental syndrome is this: Muscles are surrounded by tissue to keep the muscles nicely grouped together. If the muscle is damaged and oozes blood and if the tissue surrounding the muscle is not damaged, the blood has nowhere to go so the oozing blood starts to put pressure on the muscle. It can put so much pressure on the muscle that great pain ensues, and it can even damage nerves and everything else that is getting squeezed. In normal people a surgeon can cut the tissue to relieve the pressure, but this isn't a good idea for people with hemophilia.
We were told that we may be at Children's Mercy for several days. If this syndrome is not treated in children it can lead to amputation and all sorts of bad things. We got to the ED and were taken right in to be checked. A doctor came in and decided that Elijah was not experiencing the symptoms of Compartmental Syndrome and all we needed was an infusion of Factor IX. A nurse came in and infused Elijah, and we then waited for two hours before we were allowed to leave. The staff told us that the Hemophilia Clinic would probably want to see us the next day to check on Elijah, so we went back to Joel's sister's house to spend the night once again.
We went back the next day to Children's Mercy and met with our Hemophilia nurse and doctor. This is the first time they have seen Elijah in person since we left Children's Mercy in March. They were excited to see him and watch him respond to his mom and dad. They watched his eyes as he followed us wherever we went and laughed at us. Joel and I remember the "team meeting" we had before Elijah had his Superior Vena Cava Syndrome and we were told for the first time that Elijah had "severe damage to his brain tissue". We praise the Lord that there appears to be no effect from the damage of the hemorrhage. Elijah is doing very well. Attached is a photo of Elijah with his Hemophilia Nurse, Judy. She has been a great encouragement to us over the months as she shares our belief in a God who heals. We are grateful for the people the Lord has placed in our path throughout this journey.
We were so excited to finally get home again with our little boy that we have not wanted to leave.
Due to Elijah's history, he qualifies to be evaluated by a local group who helps children who may have developmental problems. A speech therapist and physical therapist have been over to evaluate Elijah, and they do not see a huge problem. Praise the Lord again! They will continue working with him but feel that he is doing GREAT. During his PT, his therapist said, "Well, I was expecting to come over and see a little boy who could not do anything, but you are doing great!" Elijah is about 3 months behind physically which is wonderful considering he was on his back in a hospital with wires, chest tubes, breathing tubes, etc. for almost 5 months. We keep working with him every day to help him get stronger. Helping him get stronger holds both joys and worries. He has a higher chance of needing Factor IX once he begins to get mobile, but it is so much fun to watch him smile when he can stand or sit up with help.
The other day at church I heard a little kid hit her head on the pew. How many times in my lifetime have I heard that sound? It never bothered me before, but I began to think about that happening to Elijah and how he may need medicine after doing something like that. We would have to watch him for days to see if there was a problem. So many things, yet we know they are minor when we look at all Elijah has experienced in this life.
During August we were also in Tupelo, MS, for business, and Elijah was with us. He handled the trip very well and with several more stops then we are used to, he made the trip with flying colors. Every furniture showroom we were in, people asked about our boy. People wanted to ask about his shunt, but some just walked by him several times and did not say anything. Others asked if he was premature, if he was going to be okay, most just said that he was the cutest boy they had ever seen... "What BIG eyes!" We met several people who have lost children. One lost a little girl at two days old, one lost a daughter at 18 years old. So many stories out there, and Elijah is allowing us to hear them, allowing people to share their pain and sorrow and allowing us to share our faith with them. One man told us of the anger he had toward God when his child died, but he is over that now and cannot imagine life without a Savior and a relationship with Jesus Christ.
We met a man in his 60s who has Hemophilia A, and we shared stories. We thanked him for all that he had to go through so that Elijah's life may be easier. This man had both knees replaced, both hips, etc. The older generation of men (and a few women) went through so much. An entire generation lost their lives from HIV/AIDS after receiving transfusions with tainted blood. He told us of a story of a friend of his who has had so many problems from his Hemophilia. Later in life he also had to have his liver replaced and said, "I have so much wrong with me now, but at least I don't have Hemophilia anymore!" (The liver is where the clotting factors are produced.) It sure would be wonderful if replacing the liver was not such a huge deal! Continue to pray with us that the research and medicines will become better and more cost effective.
Work has overwhelmed us at times, but Elijah helps us get our things done. The other day he sat in his stroller while his daddy set up flowers for a funeral service. I am sure he shared his opinion on the positioning of the flowers. He goes to work with his mommy at the flower shop and sometimes slows the work process down, but overall he plays very well by himself.
What an amazing few months we have had with Elijah at home. Thank you again for praying us through!
In Christ,
Joel, Judy and Elijah
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