Little Boy not so Blue (today)!

So yesterday after a very sleepy day for little man, he woke after a second nap looking very pale. Then I noticed a few cluster episodes of him turning blue again. I have never seen them happen a few times in a row. I watched in horror as he grew pale and then eventually blue and then a deep breath and he was back to tired! I just can't seem to buy that that is just his brain forgetting to tell him to breathe- Really? I want to believe the doctors and not ask more questions in fear they will want to start doing more tests but then I worry what if they are wrong and the heart or lungs are not ok! What could they missed I feel like they have tested everything- yes many things are slightly off but there is no explanation why. I was alone with him yesterday cause daddy took other kids to Loyal Oak to swim and I grew angry that he was not there to see these unusual events. I feel like he misses alot of stuff especially cause when he isn't feeling well I always offer to stay with him. 1 cause its easier and gives daddy some time with the other 2 and 2 cause its easier for me if all he does is want to sleep I can clean a drawer, pay the bills get thank yous written! But yesterday when Daddy was not home I allowed my mind to go places that hurts just thinking about it- I kept thinking what if this time he doesn't take that deep breathe - how would i get a hold of Steve and how would i tell him, I thought about all of my friends who have lost their children and I can't bear that- I thought am I doing enough for him - today i put a call into the pulmonologist and am waiting a call back of course now not til Monday- but than I think does he need oxygen during the events or all the time to prevent them- would that even help- and then today he went to school and had such a good day he was so happy and back to himself- so for a minute i want to forget it even happened and wait and see but what if next time I do have to intervene- I was just reading up on CPR tonight on internet- I havent practiced in so long- something tells me I would just do it but would i do it right - would it help- such a rollercoaster with him- his life so full of ups and downs- I wonder half the time what he thinks and feels- I wonder if he thinks I help him or if he wonders why he hurts - it breaks my heart to think he has to go through all of this and I am so selfish to think "Why Me" but Why Why can't he one of the 12 things that ail him - well I should turn in tonight since he is sleeping soundly and I am not!

WARNING-emotional venting

Bad bad day today- and I hesitated even beginning to blog- just when I think I am coping well with being a "different" mommy - something hits me- I hate even complaining about our "different" life and how tired I am of hospitals, surgeries, procedures before surgeries, medications and everything else that comes with being Lukes mom- I can't help but think of Conner's mom Sarah and Hannah's mom Marcey on how I bet they would give anything to have one more day to complain! It feels selfish to complain- but a day spent at the lake with my family today makes me sad- I know its silly but I see moms and dads sitting on the beach and they are so cute talking and enjoying their children while they play in the sand alone - then there is us! Luke is climbing up the hill waiting for us to chase him, Lily is off in another direction and Alex wants to do something like the big kids but daddy and Mommy are too busy to supervise- and Steve and I are never together- we seem worlds apart- we rarely talk- people probably think we are not even together and it probably looks like we don't even like one another- and somedays I swear we don't- we spend our days trying to keep Luke busy and feeding him and telling him "No" to just about everything he touches- I am so physically exhausted most days I just want to go to sleep and not wake for days- I feel too tired to even enjoy these moments- we fight over who will chase him this time and who will feed him- then of course bath him after ever meal- then who will struggle to give him his meds- who will make him stop crying- lately he is so crabby- who will put him to bed- yes zip him in doesn't seem hard but we do this over and over cause he keeps crying - most of the time we argue over what we think he wants but that just seems so stupid- cause most of the time I don't think he even knows- I try hard to give Alex the attention he needs and like tonight I allowed him to spend the night at Kims camper with Daddy while I stayed home with Lily and Luke- I figured once they were in bed I could do some laundry and dishes- but where I really want to be is at the camper with Daddy and Alex enjoying things as a family and we constantly have to take turns so Alex can enjoy his childhood, normal family gathering are no fun either - trying to supervise him somewhere things aren't Luke proof is a nightmare- most family members get tired just watching him and don't offer to help, I think we would be better off taking turns going to family birthdays and parties while someone stays back with Luke cause we can't have him in the heat and he can't stay up too late or he will have a seizure- I guess I am venting on here cause I have lost most friends who I could talk with- no one cares to hear about my situation anymore- friends have a hard time knowing what to say and never want to talk about their troubles cause they don't seem that bad when next to ours, I am so tired being his mom with appointments and such that I don't even have time to work on my friendships, some friends are better at understanding some not so well- it's funny the ones that I thought would stick around didn't and the ones I thought would never last through this try very hard, Its just not the same as a mom a young adult you are suppose to have that one person who goes through life with you through everything but that will never happen - cause I realize I am alone - OK see I warned you emotional venting thats all- need to go switch some laundry and put some clothes away

the dreaded GTube

The decision has been talked about forever, actually when Luke was much younger our old Gastro was ready to put one in. I took him to a new doctor cause I was concerned they hadn't done enough to find out what was wrong with him. The recent decision has been extremely difficult and especially on Dad. I could name the reasons I think Dad doesn't want it like he is afraid he may get infected, he might pull it out all things he tells me . But I can't help but think does he feel that this thing on him makes him appear even more difficult. Maybe I'm wrong but I just get the sense that this is another thing that when he looks at his boy screams I am different. Although he says he is fine with everything some days I think he copes very differently. Maybe I am off base here but we have been together since he was 17 and I think this is hard for him. His issues with weight gain, a bad swallow, a stomach still not healing even on his gluten free diet, high IGG levels, all play a part to reasons why the tube is being placed. The allergist wants to try a milk free diet but is worried about what he would eat and how he may lose even more weight. So the tube is going to be placed first and then he will be fed a gluten and milk free supplement and given foods that are safe for him to see if his stomach will heal. Hopefully he will start absorbing the Zinc and Iron that his body is severely lacking and his IGg levels will fall. The last 2 weeks he wasn't feeling well and alot causing me to have to force food and liquid on him every time he was awake. Something Dad is lucky enough to be at work and not have to experience. If he could only spend as much time with him as I do and see how some days it pains him to eat. As much as he doesn't want this and I didn't either I can't help but to be excited that when he isn't feeling well enough to eat I won't have to force him to so he doesn't dehydrate. I know it sounds selfish and the tube may not change anything but I pray that it turns out to be a decision I regret I didn't do sooner! Odd think to hope for I know but the alternative is worse!

still trying to comprehend a dr visit!

Okay so this week we saw the immunologist , we were referred there since all the biopsies and gene test and positive for Celiacs but after 6 months on a strict gluten free diet Luke is healing. We already knew he had a slight milk allergy only a 2. But the immunologist thinks this could cause healing to be slower so it looks like we will be removing milk and milk protein for a few weeks and then re biopsying to see if there is any improvement. So how am I going to feed a child who is picky and some days eats nothing or drinks nothing but dairy milk, cheese, yogurt etc.. They also went on to test for other autoimmune issues and the results will be back soon. There are other things that can present like celiacs and not be so we just wait!
Then there was the doctor visit to the pulmonologist about Luke's episodes of turning blue. It was a little sad to me that all they could tell me is his brain is forgetting to tell him to breath. Are you kidding I feel like he is smarter than that and have a hard time comprehending this.. The good news is they don't believe it to be lung or heart since he is gasping for breath instead he just loses color and goses blue. The bad news is she explained i may start to see this more often now that they are happening more frequently. Yuck! Well then there was the appointment with the endocrinologist which was probably the most shocking of the week. We again discussed growth hormone which I dont see the point since he is not actually growth hormone deficient. But at the end of the appointment the nurse practioner said "there is just one more thing on my list to discuss." She asked, "have I seen any early signs of puberty, specifically pubic hair down there" I kinda looked stunned and for a minute thought she must have the must checklist . I thought she must be looking at the list for teenagers. I figured she must have forgot this tiny handsome little child is ONLY 3! I must have looked shocked and she said, " A little hair is normal but if its black curly hair thats a problem!" Crap I know what black curly hair is but I could not believe she was explaining this to me! She went on to explain to me that children as young as Luke can hit puberty this early. Some of the children like Luke with different deletions and duplications have satrted as young as 3 or 4! I was shocked and she made sure to tell me that I should call there office if this happens so they can stop it. I kindly said Thank You and realize now she was doing me a favor and by not mentioning this I may have not noticed:) HEHE! But still I am still in a fog! Puberty at 3 or 4 like I don't have enough things to worry about. I am clearly not ready for this! So I will add this to the list the long list of things the doctors have told us CAN HAPPEN and hope it is one of the things that DOESN"T! but still what a week of crazy news! Next week 3 more therapy and 3 more doctors appointments so stay tuned for new developments!