Christmas 2011

Jack had a great Christmas. He got many gifts. He loves Christmas. He was very happy and said Happy birthday Jesus many times.

He had pneumonia after thanksgiving but he is doing much better. We go to Cleveland in February for an appointment with a genetic counselor. We will see if we get anymore answers. The doctors have new names for things every day. The doctor said at Jack's last appointment that he has connective tissues disease. Connective tissue disease is separate from the confirmed mitochondrial disease. Connective tissues disease falls under many diseases.

Jack's pain and tetany have been a daily struggle. Jack seems to deal with the pain well for the most part. He still falls frequently and has tremors but it depends on the day on the frequency. Jack is such a inspiration to me. I love my son.

Going to Cleveland

Well I had to call in to my fairly new job for the first time today. Jack had a really bad night. This happens a lot but he was up so long that he was exhausted . I could not get him to get up. He was crying and pleading with me to let him sleep and he was sick to his stomach. Who knows if working out of the home will ever work for me. I will give it a little more time.

Jack has had a rough week in school this week. He got called fat in lunch. He did not want to participate in gym. When I talked to him about it he told me that he looks funny when doing the exercises. He said he cant do them like the other kids. He also said his legs hurt sometimes. He is in adaptive PE but I allowed them to migrate that in with his class so he could be with his peers. I don't know if that was the best idea. I just don't know sometimes if I make the best calls for Jack. It is so hard making the right decisions when your child has a disease that fluctuates from day to day.

We go this Friday to the Cleveland Clinic for Jack's check up. We are well over due. Pleas pray for us to have a safe trip. Please also pray that we get more answers and insights into Jack's disease. Thank you for all of you who pray for Jack. There is power in prayer.

Check Up

We just came back from Jack's check up with his orthopedic surgeon. Jack's left hip does not sit in the socket correctly so he has been monitored since he was three for that. She also deals with his gate and some of his walking issues. The appointment went pretty well. Jack has had some periods of sharp pain in the hip that makes him cry. This has happened several times in the last four months. He describes it as his hip pulling out. His x-ray looked the same. The x-ray showed the hip the same. It was not better but it was not worse. She knows Jack pretty well. She wants to send him for an open MRI of the hip. He has had MRI's before for other areas and they sedate him for it. We are going to try an open MRI and no sedation. Please pray Jack does well with it. She is also referring him out for possible injections in his muscle. He is also going to get some new shoe inserts to help with his walking. Over all the appointment was good.

Jack has more appointments coming up this month. He also goes to Cleveland to see his specialist in October. Please keep him in your prayers.

School is getting ready to start

Jack has had a pretty good summer. We went to the fair and I was very proud of him. He wore his cooling vest with out any problem. He even asked to put it on. We also bought him a transportation chair. That is what they call wheel chairs these days. He was very excited. He did well with it at the fair. He is getting better in dealing with the vest and when he needs to use a wheel chair.

I have a new career outside the house so that has been hard. It is hard not being with Jack and Noah every minute. Tomorrow his father has to go in my place and meet with the school. We are trying to avoid any first day of school issues like we had last year. We have to make sure the air conditioner is in place, transportation all set up and many other little details. Please pray all goes well.

Hot

Well this has been a hot week. Today is going to be even hotter. It makes it very hard for Jack. Over heating is a major concern with his disease. He has a cooling vest but in this type of heat staying in the AC is the best option for him. He said last night before bed, "can we pray about the hot weather mommy". He also said "make sure I don't get sick or die tomorrow". People might think that is a bit dramatic but that is the seriousness of Jack's disease. He is also having sun and skin sensitivities. He burns extremely easy. He is also experiencing scaring issues. We have talked to his specialist here and it is not uncommon with Jack's disease to have these issues. It is something we are going to talk about with the specialist in Cleveland when we go in August. The specialist here gave us some fancy names and things to look up.

Last night really made me think. Jack is 7 years old and is starting to have real concerns for his health and safety. That is because we have been really trying to teach him about everything. He has to learn how to take care of himself and recognize warning signs in his body. People look at Jack and he appears pretty normal. It is easy in a school setting or when we are not present for someone to over look something with Jack and him be in a life threatening situation. We have had no choice but to start teaching him the seriousness of his disease. It is hard because I do not want to scare him. We have had no choice but to explain the steps and worst case scenarios of what can happen if proper care is not taken in all different types of situations.

I hear people complain all the time. I even find myself complaining about things. Last night it made me realize how hard it is for Jack. He is 7 and has to think about what can happen if someone doesn't notice or help him prevent something. He has to think about the weather. He cant always play the things the other children do. I watch him get picked last for games because he is the slowest or falls. He is the one that none want on their team because he is slow. He has so many daily struggles. Walk one day in his shoes and it would make us all appreciate our lives a bit more.

Jack takes each day at a time and is a very happy person. He has a great sense of humor and is very kind. He is starting to really have to deal with daily frustrations. He is starting to have to deal with the reality of his disease and how it effects his life. He struggles with that at times. He has fear and questions. He has frustrations and moments of disappointment. Regardless, he gets up the next day with a smile on his face and he tries very hard to have a good day.

Jack is not feeling well

Jack has not been feeling well. His stomach issues seem to be on the rise. He had a real bad night and not the best day. He over all has been having stomach issues more, but the last 24 hours have been worse. I am not sure if he has a little bug or if it is his disease. Regardless it can end up being serious for him. Please keep him in your prayers. I will keep his blog update. Thanks in advance for your prayers :)

Jack is done with 1st Grade :)

Jack's last day of first grade is tomorrow. We had a very shaky start to the year. I will say his room teacher's ended up being excellent. They were very much on point with his overheating. He did miss a lot of school in the middle of the year due to illness or pain. I did in the beginning of the year and the end have to keep him home due to the heat. They put an AC unit in the classroom FINALLY, but it broke. Then after it was fixed it did not cool very well. That is something I will contact the CPSE chairperson about for next year.

It is so irritating dealing with schools and some doctors for Jack. I am sick of the answer being he has mitochondrial disease. It is like because there is no cure and no prognosis we just have to deal with things. Then because he looks normal people/school many times does not see how serious certain situations can potentially be.


We have an appointment with his specialist here in Syracuse tomorrow. We have an appointment in Cleveland in August. Please continue to keep Jack in your prayers. Pain management is his main issue at this time.

Jack's Birthday

Jack's Birthday party is today. He is turning 7 on Tuesday. We want to thank everyone that prays for Jack. We also ask that you continue to pray for him. He battles with his disease every day. We believe there is power in prayer. We know the prayer's of everyone has helped get him through all the rough times :)

check out his main new blog
www.loveforjackmclean.blogspot.com

New Blog address

We now have two blogs going....I will update on the new one and copy and past on this one....I had trouble getting in this one for months. I figured it out after I started the new one :) The new address is http:/loveforjackmclean.blogspot.com/

Update

Jack had an appointment last week with a pain management doctor. The appointment went pretty good. We have started a pain medication at night. I have been very leery for years due to his age of putting him on pain medication. I will say it was a hard decision. He can have it three times a day and I agreed to only one time a day. I am giving it to Jack at bedtime with a couple other medication he takes. I thought this would be the best time since he wakes up with pain and tetany mainly in the middle of the night. He has been on it since Friday. It seems to be going OK. He has still complained of pain but has not woken up at night with any pain since friday. He has had one tetany episode at night. That is painful and wakes him up.
The new thing since giving the pain meds is the last three mornings he has complained of pain. He usually doesn't complain on pain in the morning. It is usually later afternoon, evening, or middle of the night. This is something new. I will keep monitoring him closely. We go back next Thursday to follow up with the pain medicine doctor. He is also getting a unit for home that he will hook up to when he has pain that will send electric currents to the muscle to help with the pain. This is all very new but I feel worth trying. There is no cure or prognosis for Jack. He will most likely have to deal with pain all his life. The specialist in Cleveland thought it be a good idea to get Jack started with a pain management doctor now. Keep praying for Jack. It is through the power of prayer that Jack is as strong as he is. We strongly believe that all the prayers for Jack help him.