Mayo

Well yesterday I called the Mayo Clinic to see if Logan's skin biopsy results are back. The nurse called back and said that the doctor is on vacation and that the doctor on call did not feel comfortable talking to me about the results. The nurse said that the doctor said the results appeared normal and that he didn't know what our doctor would want to do from there. So I translate this to mean that we had normal test results. We should hear back from our doctor after the first of the year. Don't know if this means more tests? I have no clue. We did discuss the possibility of a spinal tap in the past but this was never pursued. I think he needs to be re-evaluated again so the doctor can see if there are any changes that may lead them in a different direction.

All in all, I am bummed out that we still don't have an answer but a little relieved at the same time. It is such a mind game to go through. You want a diagnosis but you don't want a bad diagnosis. And what does "bad" even mean. I guess it would just be nice to have an understanding of some sort of expectations for the future. I know we will never know exactly what the future holds but if he got a diagnosis we could at least know what other kids have experienced.

At the moment Logan is battling some pneumonia. Two nights ago he had a rough night and then spiked a pretty high fever which is not normal for him. He was breathing really fast and whimpering. I gave him a bunch of breathing treaments with no change so we trucked it to urgent care. They saw a little spot on his xray that was changed from previous so he is now on antibiotics. Last night was a rough one and this morning he was pretty fussy but some of his congestion is clearing this afternoon. He is such a trooper! Now Lauren isn't feeling well and I am starting to feel under the weather. Thank goodness Joel is coming home early from his fishing trip. Now he will get a house full of sick people!

Logan is our vibrant one year old with a suspected mitochondrial disorder. Logan was born without complications and seemed to be a pretty normal infant. He always was slow to meet milestones, didn't breast feed due to difficulty latching, and had horrible reflux. By the time he was six months old he was obviously missing developmental milestones. He had yet to smile, laugh, or coo. He could not hold his head up and was not attempting to crawl. He also poor weight gain, and abnormal movements of his body.

At six months of age his growth was falling off the charts. He was failing to thrive with little interest in drinking from a bottle. His pediatric nurse practitioner started us down the path towards answers.

Thus far we have found he has hypotonia, choreoathetosis, laryngomalacia, strabismus, and problems with elevated lactate levels in his blood stream. After seeing various specialists we are now awaiting skin biopsy results from Mayo Clinic. They checked for something called pyruvate dehydrogenase deficiency which was negative. They have since sent his skin fibroblasts to Baylor College in Texas for further mitochondrial testing.

In the meantime, Logan is at speech therapy a couple times a week and at occupational and physical therapy once a week. The school district also comes to the house weekly and we have a public health nurse that follows Logan's progress. He has  G tube in place to receive feedings. Logan is so blessed ot have a great support group of family, friends, and healthcare and educational resources. We want to continue to thank all the people that have and continue to be integral to Logan's continued successes...Tammy, Sara, Bev, Patty, Dana, Katie, Jane, Nicole, Marilyn, and list goes on.

Christmas 2011

We did it! Christmas has come and gone. We made the haul to Fargo to have Christmas with my family the weekend before. Logan sat on Santa's lap. Lauren was too freaked out! And then we made the haul to Brainerd for the Zacher Christmas this past weekend. The kids did great. A little cranky but that is to be expected. Logan almost cracked a few smiles over the weekend. He is so close! Santa was very good to the kids this year and now mom and dad have to purge the house to make room for all the new things.

The end of our year will consist of cleaning up house and getting ready for the new year. Logan has a couple of his usual appointments this week including therapy and a meeting with the social worker. He was accepted for medical assistance so it will act as a secondary insurance and will hopefully open the gateway for more progams and assistance. Along with that we found out that the gov't will cover the cost of his monthly insurance premiums through my private insurance. There is a god! Every little bit helps. Otherwise things are status quo. Merry Christmas Everyone!

Swallow Study

Logan had a swallow study at Gillette last Friday. We had the test done to evaluate his swallowing after having gone through intense speech therapy using a technique called vital stim. Unfortunately the results were not positive. He is aspirating just about everything including his own secretions. The therapist at the test recommended we stop feeding Logan by mouth until he can be evaluated further. His congestion is improving. We are only having to give him a neb a couple times a day instead of every four hours. The GJ feeding tube is getting easier to work with. We are trying to figure out how to maneuver the tubing with his clothing. He is starting to outgrow a lot of the infant pajamas and onsies that helped hold the tubing in place. He is still skinny, all his growth shows in his height! I have done some web research on different clothing options and my mother in law, Cindy and I are going to try and make adjustments to his clothes.

A side note, a great side note!: Logan got his fourth tooth in last week. It is his second molar. He skipped a few of the front teeth and decided to grow molars instead!