A helpful foundation

As some of you might know or be able to guess, financially taking care of Jack can get hard. It has been tough even with insurance.The co pays, prescriptions, travel cost ect.. can be a lot. We have found it very frustrating because any were we have gone for help it seems we don't qualify or make to much . I have found out that unless you are at poverty level there is not much help for you. For the average Joe in this situation good luck.

Well a few months back Jacks grandma cut a article out from our local paper. She gave it to me regarding a local charity. That charity is called Charity For Children. They are different because they help the average Joe. They also help with the expenses other organizations might not. They help with car repairs, travel expenses, ect.. They are a fairly new organization only around for three years.

About a week ago I submitted a application, and a letter about our situation. I received a call yesterday that was a true blessing from the Lord. This lovely women called me and said she had received our information. I shared a little about Jack and the situation ( I already had in the letter) and encouraged her to check out his blog and his story. The great blessing is that this charity is going to pay for our hotel room the two nights we are in Cleveland. They are also (if i submit my recites) going to reimburse us gas when we return. What a blessing from above. This organization is wonderful and I would encourage all that read this to check out there link. If you are a person who likes to donate to a charity, this would be a great one. I plan on helping and taking part in any fundraising they might have. I told this women to send or call me with information regarding upcoming events. I plan to share them on Jack's blog.

So many charity's are large and yes they need donations, but this charity is new starting out and helping the middle class who cant find help else were. This is a charity to put money into!

Still Answered Prayer

Well I just got a call from the office for the swallow study. The doctor had a death in the family and they have to reschedule. He will be out for two weeks. So they cant see Jack till 3/13 which is the same day as the pulmonary. So we will have to reschedule that also . His specialist here wants the swallow study done before the pulmonary appointment. So it is still answered prayer but it is longer we have to wait. What can you do? I asked if there was another doctor, but there is only one. This is one of the only offices in Syracuse that does the study on young children. So we will have to wait. We are getting use to waiting.

I guess pray for the doctor and his family is all we can do.

Answered Prayers

Well Jack this week is doing a little better. His cold seems to be going and he seems to be feeling better in that respect. He has had a few bad days this week. Yesterday he had quite a few tremors. I think it was due to fatigue.

Well we are thanking God for some answered prayers this week. Jack FINALLY got an appointment for a swallow study. It is this Wednesday in the morning. He also has his pulmonary appointment scheduled for 3/13. So we are happy about that.

Please pray that Jack will get some answers from the swallow study. His specialist says if Jack is having a good day they might not see anything in the swallow study. Even if he is aspirating at times. This can be very frustrating for us. Jack is being impacted muscle wise, big time. It is hard because if it isn't acting up during a test ,for example during the swallow study, he might appear normal.
Please keep praying about the appeal I sent to the insurance company regarding the blood test. I have not heard anything from them.
A big prayer request is that in April when we go for the muscle biopsy we get answers from the test and that we don't put Jack through this for nothing.

We thank everyone so much for there prayers. Keep reading the blogs and scrolling down to make sure you haven't missed any. If anything you will see answered prayer and see how God responds to the prayers of his people.

Jack's appointment and referral update

Well we went on Friday to see the specialist here in Syracuse. It was a very good appointment and I actually got somewhere. The specialist ( he is amazing) personally got on the phone with the place for the swallow study and talked to someone there. He told them he needed to have Jack seen ASAP and told them of his condition. They already had records from his pediatrician, but with out the specialist records were not aware of the complete history. So we should have a appointment this week coming up. He also is referring us to a pulmonary doctor at the end of the month following the swallow study. Due to Jack's respiratory problems and asthma I requested this. He agreed with the idea and said the choking (if he is aspirating) could cause some of the respiratory problems. So the two appointments are related. We will see him after the muscle biopsy to discuss more treatments. He will discuss the medications with the specialist from Cleveland after the biopsy. After that Jack will just be maintained by the two specialist and we will deal with problems if and when they arise. He will continue his therapies and medication treatments are all at this time. The specialist would still like that Mitochondrial DNA screen done. I appealed the fact that the insurance will not pay and I am waiting to hear back. Worse case I guess we try to save up the money to get it done. Other then that, I guess that is all we can do.

When I got home from the appointment I had a message from the nurse from Cleveland. Jack's Muscle biopsy is April, 19th at 7am. We have to go in the morning of the 18th for preoperation testing. So we will leave for Cleveland on April 17th around noon. If all goes well we will travel home on the 19th. I talked with a mother of a child who had a muscle biopsy done. She said her daughter was so drugged she slept the hole way home. It was the next day that she was in a lot of pain. They cant walk for a few days either. She did say by day four you would have never known she had it done , so they bounce back fast.

Jack today still has a cold. He is getting better. He has had diarrhea lately, but other then that he is ok. Please pray we get a answer from the muscle biopsy. There is a 10% chance we could put him through all this for nothing. It is the best chance and testing that we have to find out information. If we could find out the exact type of Mitochondrial disease from the Muscle biopsy that would be awesome! Please pray we get some answers and Jack does well.

It is very frustrating to see how other medical professionals see Jack. On a good day if you didn't know Jack was sick you would never guess that he is. On a bad day you might think he had a muscle disease or CP. His physical therapist (who I love) can test him or give him a request on a good day and he can do it know problem. She can on a bad day give the same request and he not be able to do the request at all. It is very frustrating but common according to the specialist from Cleveland. It is hard to see him have bad tremors, or see him falling all over. The crying in pain at night, the coughing and wheezing. I must say through it all his spirit is high. He is so amazing! He inspires me even at 2 am when I think I cant take anymore. He has the joy of the Lord! He presses on and he fights. Nothing will keep him down!

This week 2/12/07

Jack is having a hard week. He is sick again which is common for him. It is turning respiratory as it normally does with him. He hasn't slept to well and is very fatigued. When fatigued he can be a accident waiting to happen. His choking has increased due to this fatigue. He has had pretty bad tremors today also.

We are still waiting for a referral for a swallow study. We seem to be waiting on doctors for a lot of things. We should be hearing anytime regarding when he goes for the muscle biopsy. They estimated sometime in March. We also go next Friday to see his specialist in Syracuse. I need to discuss many things with him since I haven't seen him since the Cleveland trip and seeing the specialist for the mitochondrial disease. I also need him to give me a report stating about Jacks diagnosis. I need it to fight for program regarding Jacks, Speech, OT, and PT, services with the school district. Jack has to change over to them at three .

Please pray we get program for Jack. Also pray we hear soon about these referrals. I also appealed the insurance since they will not pay for the blood test that the specialist wants. So pray I hear something soon and it is good.