Our computer crashed bad. It took us two weeks to recover it and get the basics back. I haven't been able to get my email / outlook back up, although I was able to back it up as far as I can tell. I am hoping it is only a matter of time. Although we are slowly getting there, I am still limited. Everything takes longer. We adopted our two boys Joseph and Joshua thinking Michael was healthy and stable like all of our kids. Him getting sick threw us into a whirlwind of bills, and everyone is screaming for their money now. I wish I could get rid of one of our loans because that would at least make things feel sort of doable. Ah well. One day at a time, right? We are managing with our house payment, but the amount of gas we use has quadrupled with all the many Dr's appts, evaluations and follow ups.

Michael's Evan's syndrome with his platelets, red blood cells and white blood cells seems to have stabilized so praise God for that. His lab work is normal, and the medication is working. They even decreased his dosage. That is the great great news. The hematologist and rheumatologist both thought Michael may have Asperger's complicating the situation, which would explain a lot. So, they called in a psychology referral and had the initial evaluation. The psychologist agrees that a full assessment for Asperger's Syndrome is appropriate and that he may indeed have had it all along. It is just much more obvious now that he is sick. His thyroid has also stabilized and so they are keeping eyes on that; his last thyroid labs were normal. Another yeah.

Michael is very greatly struggling with many many digestion issues and a LOT of undigested food, many proteins such as meats, but also bread, veges, and fast food. The gastroenterologist evaluation was yesterday to check for that and gluten and lactose intolerance. They want to rule out celiac disease and a bunch of other stuff. We are also hoping to hear back soon on the bazillion labs the rheumatologist did a few weeks ago. He still gets headaches, joint pain etc. His knees have been swollen and painful. He does not get quite so tired though, so that is looking up. Maybe since his bloodwork is more stable.

Michael now has sunglasses he wears for the light whether the sun or in stores or buildings depending on how bright it is, how bothered he is, how he is feeling or if he has a headache. He does not seem to need to cover his arms and head in stores and lights quite so much, so we think that sensitivity may be more related to his eyes and probable Asperger's. He does still have to cover up in the sun during the day, but at least it makes it easier to get out in the evenings when he is up to it. It seems his neurological system and immune system just went haywire and that affected everything else. We are getting him more and more stable one body part at a time. They will be doing an echocardiogram in a couple weeks to check for fluid around his heart due to his on-going chest pain. He also will be getting a pulmonary function test. He started having difficulty breathing last night but at least it was only last evening for a few hours, so we are keeping a close eye on him. Hopefully not another new thing, although that is a new thing if you know what I mean.

Labs are still every week. The gas and Dr copays are the hardest, so we don't go out nearly as much as we used to and have really had to become homebodies. We are praying for financial miracles and for the Lord to help us out of this. The rheumatologist also wants Michael to have an evaluation by an opthalmologist to check out his eyes because of the on-going headaches and light sensitivity.

We did just hear this evening that Michael's platelets were normal at 318, and so hematology is decreasing his prednisone again and will be weaning Michael off of it over the next week or so. He is now down to 10 mg once a day, which is a huge huge difference from the gigantic doses he was taking at the beginning of April. Rheumatology told us his thyroid antibodies were actually elevated last they took them still at 168 (should be negative). That was another great improvement from the greater than 2,500 level in early April. The biggest concerns now are digestive (possible Celiac), chest pain and difficulty breathing (possible fluid around his heart), and the ongoing many other symptoms such as joint pain. Michael has had an aweful time walking today due to pain.

Michael also finally got his appt to see endocrinology later this month after waiting for 2 months. We are extremely grateful to the supervisor who helped us out with this. We would still be waiting without her.

We also found out that Joseph our 6 year old may need a pacemaker. He has pauses in between his heartbeats of 2.4 seconds, and at 3 seconds it can be dangerous and cause lack of oxygen to the brain. For now, he is stable enough that we are just watching him. He does get chest pain a few times a week, but it does not seem to slow him down otherwise. We are waiting because the risks of open heart surgery and the very complicated nature of the surgery he would need along with the possible need for a pacemaker just don't outweight the risks right now. The cardiologists both agreed that monitoring him over the next 6 months will be best unless his condition changes.

For all the many many gifts, we are immensely grateful. Michael received two DVD players (thank you Cathy and Tammy) within a day of each other. One he has set up in his room, and the other he has in a pack to take with him on the road. He also very generously received two gameboys (thank you again). Again, he is using one for home and the other in a pack to take with him on the road. It has been such a blessing. When we do get to get out usually to a McDonald's playplace because the kids can run around, Michael really likes being able to take the gameboy and DVD player with him to have something to do sitting down.

Michael has been blessed with clothes, pajamas, short and long sleeved shirts, and shorts. He even has received a hand sewn yoda robe, hand sewn yoda blanket, and a really cool quilt. We appreciate everyone's generosity towards making Michael more comfortable.

For those of you who have asked, any money which is donated will be used towards the children's on-going medical care especially medications, Dr copays, labs, gas for the van to get them there.

We are truly grateful for the financial gifts we have received. Every financial gift has been truly answers to prayers, and every single dollar is a miracle. Thank you, thank you, thank you. May the Lord bless each of you in your kindness and generosity towards our family and our children 1000 fold.

I am rebuilding my email database until such time when hopefully (crossing my fingers) and can get my outlook back up.

Michael and Gabriela have been working in a computerized school curriculum which was the best decision ever. Michael is doing better in school than he ever has and is passing his classes.

Thank you for all your support and prayers, and thank you for writing.

I have been feeling very overwhelmed and just praying from moment to moment for God's grace to get me through and wisdom to make the right decison for the children he has so graciously gifted us with.

Thank you for your listening ears, and I hope you don't mind my lengthy post.

In Christ and only for His glory,
Jennifer