This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Friday, January 28, 2011

Who Knows??

I've had so many things on my mind the last several days that I havent been able to really put my thoughts together and put it all into words but Im gonna take a stab at it. Lately it just seems that we are swinging from one issue to the next. Everything in my life lately seems "out of sorts" and yet I still feel that I am so blessed. To shed just a little bit of light and explain things... Hollie is our 13 year old. 13 yr old female..enough said! She is beautiful and smart. She is sassy and opinionated. She is mature and responsible while being immature and irresponsible at the same time. Bipolar=my definition so far of the teenage years!! Aidan is our five year old. 5 yr old boy...again, enough said. He is sweet, loving and an incredibly funny precrocious little boy. Oh did I mention hes amazingly beautiful too? (Dont tell his Daddy I said that!) But...he is messy. Full of messes. Dramatic and full of energy. So much energy that even if I had the time to be working out again right now, I dont know where I would pull the energy from. He can literally climb my wallls! And then, theres Lydon...whose middle name is "complicated". I dont know what his middle name really means but they should add complicated to the list. He has so many issues and it seems that once we think we've solved one, another one creeps up. He is having severe GI issues. His tube is backing up. It really seems to hurt him. He is vomitting off and on and even occasionally has milk in his tummy after being fed through his intestines all night long. Your intestines should drain down, not up into your tummy! On the other hand, he seems to handle his fluids during the day and he certainly is enjoying his cheerios, crackers and occasionally even bites of spaghetti or oatmeal. So what do we do? Take away his daytime eating? Add more medicine? Drain his tummy when he gets too full? That is all up in the air. We will be doing xrays and seeing the GI doc on Tues. He is also struggling with "the crud" from all of this weather change. Again what to do? Keep him inside all the time or let him go out and experience the beauty of the sunshine and its warmth or the crispness of the cold winter wind? When he was seen in the ER a couple of weeks ago, they did a lot of bloodwork. One thing was to test his immune system. That test came back looking pretty low. So, we will be seeing an immunologist now to discuss this new finding. I spoke with the nurse from the mito disease doctors office the other day. Some of his bloodwork from their office came back. It showed an abnormal loss of a chromosome. What you might ask does that mean? Well, her response to me was it could mean nothing or it could mean everything. Who knows? Jonathan and I will have our blood drawn this next week to see if there is any correlation. If there is, then in theory it means nothing for Lydon. If neither of us have the loss then only Lydon has it and it could be the underlying cause of his problems. We now have Lydons medicaid and MDCP all approved which is great! But, that also means working out nursing so that it best fits our family and benefits Lydon. I hope this all doesnt sound negative. I do "see the silver lining" in things. I have a beautiful teenage girl who is more than capable of helping me out with things. She gets herself up every morning for school. Makes nothing but straight A's in all Honors classes and does her own laundry. Aidan, thank goodness, is all boy! He seems happy, healthy and very secure despite being tossed around from place to place on occasion. Lydon also has a lot of good days. I am thankful he is walking and able to enjoy a cheerio or a cracker. He isnt really talking to us but he certainly lets us know what he wants or doesnt like. All very normal behavior for a 21 month old. So, I dont really expect for any of this to make sense to anybody else. This is where "its my blog" logic comes in. I am really just putting my thoughts down in order to try and get them out of my head for a moment. That is until the next cup of chocolate milk is spilled! Thanks for all of those who continue to pray for us. I know that is what is getting us through. I will post an update after our appointments next week.

Thursday, January 20, 2011

Still sick?

Just a quick update here.... Last week we struggled through the hand, foot and mouth disease. Lydon still faintly has the head to toe rash that he was covering him but thank goodness the blisters have all popped and are now peeling. He seems 100% better in that area compared to this time last week. However, he has still run a low grade temp (101) and today he has vomitted a couple of times. Never ending...guess that is par for the course so once again we will wait and see.
In other news, we saw a pediatric sleep specialist today. She was so thorough and knowledgeable. It was almost like she already "knew" Lydon and knew what to do. So refreshing!! She talked with me for a long time about his airway and respiratory issues and how that effects his overall wellness and quality of life when he is awake. We decided to start him on some inhaled steroids and hopefully knock out any potential lower airway constriction. Then in two weeks, we will go for a sleep study. At that point, we will discuss in more detail a couple of the options we talked about today. One of those being starting Lydon on oxygen at night. The doctor explained to me that with Lydons excessive sleep, he could still not be getting any Stage 3 REM or deep sleep which could and most probably does effect his daytime alertness and poor growth pattern. Growth hormone is secreted in Stage 3 sleep hence his continued growth failure. All in all, a lot to process but such a refreshing visit to have someone so knowledgable about what is going on in Lydons body and what to do about it in order to help him out as much as possible. On a side note, she looked him over and said that he had a very red throat and lots of drainage down the back of his throat. I will update when more info is available.

Friday, January 14, 2011

Out of the Blue

Well, I knew a temp over 103 couldn't be nothing and sure enough it was something. Lydon spiked the fever on Monday afternoon seemingly out of nowhere but I thought (hoped) that maybe the weather change and audiology testing coupled with our lunch date that day had just been too much for him. Not so lucky. He continued with fever up to 101 and no symptoms until yesterday when I noticed that he was developing a rash. Well, it started to spread like wildfire and looked terrible. After looking up a few things and talking to my wonderful nurse mommy friend I became really concerned about possible measles. So, I called the ped who checked with the mito specialist and they decided I should take him to make sure he was ok metabolically. So.... back we went. He was beyond miserable by the time we got there. He was drooling terribly because he didn't want to swallow. They pulled usback into a room very quickly and got an IV started and labs drawn. After the doctors examined him, they agreed that he has a very terrible case of hand, foot, and mouth disease. They started him on some fluids and gave him some Codeine. Most of his labs came back looking fine. A couple of them will not be ready until later this morning. So, they gave him a little more fluid and pain meds and let us come home. We will follow up to make sure those things are ok too. So, for now he is resting comfortably with the pain meds and some benadryl. Hopefully this will heal up sooner than later and not produce any secondary infections. That is our prayer. Ill keep you updated with any changes.

Tuesday, January 11, 2011

Sweet and Sour

This is going to be a short post because I am dealing with a sick baby boy hence "the sour". But, here's the sweet... We went yesterday to the audiology dept at Hermann. There, we went through more than an hour of advanced nerve conduction hearing tests. Let me stop and say that a number of neurologists have seen Lydon in the hospital. They have all told us that Lydon exhibits a delayed auditory response. That coupled with his significant speech delay has brought about much concern about his hearing. So, after all the tests were complete, the audiologists told me that there was nothing that signified any hearing loss or delayed nerve pathways associated with his inner ears or hearing. So.. that was a sweet and welcomed good news report. Afterwards, we met up with Mimi (Jonathans mom) and Aidan for some lunch. Ly of c ourse didnt eat a bite but that isnt unusual. Then we came home for a nap. That is where the day turned sour. When Lydon woke up from his nap he had fever I changed him and gave some Tylenol. We loaded up to go get Daddy from work and stopped at the store. By the time we got home, Lys temp was up to 103.6. He has never had a fever that high before. I worked through the night to keep it down. When I got him up this morning, he was under 100 and is acting very sick but has no symptoms at all. The only thing that I can imagine is that maybe something is going on with his j tube since it was backing up some during Christmas. I will update with more details when I know more. For now, I am medicating and watching him like a hawk!! Keep us in your prayers.

Saturday, January 1, 2011

Happy New Year!

Well, I feel like I should wrap up 2010 and welcome 2011. We had a rough year with many trials and challenges but we made it. We thank God for the many many blessings in the midst of it all. We never wanted for anything and all of our needs were met and often times above and beyond our expectations. Things snoballed out of hand quickly with Jonos health in July when he was suspected of having Meningitis but then became septic. He recovered and is doing incredibly well considering how sick he was over the summer. We had many problems which surfaced and escalated with Lydon but i think we have a good handle on it and have a great team of doctors and specialists looking out for him. Wednesday night, Lydon and I spent the night in a nursing facility . This was the last step in getting him approved for tbe MDCP program and/or Medicaid. It certainly wasn't my choice of places to be on my birthday but I couldn't have been happier to have completed this process in 2010. We should start 2011 with Medicaid which will include some nursing care aand additional help with Lydons therapies and medical expenses. We have a lot of testing we will be doing in January. Hopefully by Feb we will have the results from all of the bloodwork we did in Dec. I will continue to post Lydon updates. Hollie is doing great in her last year of middle school. She will earn two high school credits this year and so far has done it with all A's. August of 2011 will bring lots of changes to our house. Hollie will start high school and Aidan will start Kindergarten! So far now, we will look forward to 2011 even with its unknown variables for in it all, God is good.