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!

Forgetting How to Breathe

I took Luke to the pulmonolgist today, deep down I think I knew it was going to be a waste of time. I felt very stupid in the appointment because it had been mentioned before. In our big care conference a few weeks ago we briefly discussed Luke's cyanotic events. I have repeatedly found him completely BLUE from his fingernails, chest, lips- he looked like a smurf. However at the care conference we didn't disuss them too much because I hadn't seen them in awhile. Well they came back and are happening more frequent. Sometimes he just grows pale , very pale as if you could lie him in a coffin and he would look like he belonged there. That is my biggest fear. That one of these BLUE episodes could lead to just that. Although the doctors have told me before it was probably just a neurology thing that in that moment his brain was not telling him to breathe. I still paniced what if his heart was defective. what about his lungs. I never want them to test him, prick him, or torture him for any tests but I wanted them to tell me something, find something, that they could fix. Well just like everything else with him they have nothing. Nothing to tell me on why this is happening, if it will stop or anything I can do for him. It is apparently just a central apnea. I guess I shouldn't say just. Cause its bad , I keep thinking hes smarter than that. How can my baby boy not know to breathe. I know that it doesn't work like that and obviously in the part of the brain that isn't working correctly there must be damage to the part that tells the body to breathe. I knew in my heart that what I was seeing was not a seizure but really almost as scary. At least when he is seizing most of the time he does continue to breath even though it is shallow, he breathes. But for know I guess we do what we do about every new diagnosis added to the list, we hope and we pray that it will correct itself and he will be healed. But for now I will continue to panic and be more afraid for him when he is not with me.

Wedding Anniversary and G-Tubes

Tommorrow Steve and I will celebrate our 8th Wedding Anniversary. It's hard to believe that 17 years ago when we were both 17 we fell madly in love with each other. Many things have changed and yes our love for each other has changed too! 17 years ago I loved watching him take care of all of the special needs children I babysat for with the same compassion I had. I used to think what a great father he had. I remember thinking if he could help me with feeding tubes, adaptive equipment transferring in and out of wheelchairs than life with "typical" children would be a breeze. Well I guess God had different plans for us.
It has taken many years and mixed emotions for me to finally come closer to believing God gave me Steve to share in this life -together we could draw strength from one another as we care for our own special needs child. I think he knew it was my calling and Steve was not like most other - that he do could handle this very different life. Life is not like we pictured but together we will carry on for each other and all of our children! The last few months have been trying with Luke's sleep dysfunction, somedays only sleeping a few hours. The stress of it all is even more difficult when you get tired. Dealing with watching your child suffer is difficult enough but being so physically exhausted many nights could make anyone on edge. When I think about the way we have treated each other during those stressful times I get embarrassed. Of all the times in life when two people need each others support more and we would argue. The issue of the G-Tube has caused many arguments. I was completely against awhile ago and then I started to come around to thinking maybe it would help. Daddy has wanted nothing to do with it at all and made himself clear it wasn't an option unless it was medically necessary. The doctors thoughts were always different and although some thought it may help with some feeding, and sleep issues it was never presented as a medical necessity. That is until a few days ago after Luke's recent swallow study when they realized something was going wrong with his swallow function. The main issue with their findings was Luke feeling uncomfortable and him taking in volume at one sitting. So tomorrow on our 8th wedding anniversary Daddy and I will meet with the doctors to discuss the swallow function and play the tape for Daddy and explain its medical necessity. I know that tomorrow will be a difficult day for everyone as we will most likely schedule a surgery. I pray that tomorrow God will give us the strength that he has entrusted us to get through this difficult decision with little stress. I know when we leave the appointment and drop Luke off to Gramma we will we will have more to discuss. As we sit at dinner to celebrate our wedding anniversary and reflect on the last 8 years I hope and pray we can remember why we were chosen for this difficult job!

OK I need you to tell me if you think this sounds crazy

OK many of my readers have known me for a long time. I have always been the girl to get in over my head, take more hours than I can work, the max credit hours, help anyone who asks and never say "no." Obviously when I look at my life and where I am right now I realize God really must have all of our lives mapped out. Scary for me to be admitting that out loud to everyone cause some days I feel completely opposite like he must not exist. However, I can't look at all of the experiences caring for children with special needs and then having my own and feel that he knew he had chosen me to be Luke's mommy long ago! I realized very young when I was babysitting for special needs kids at just 14 years old how extremely difficult it can be on a family. Now I live with it and my experiences having Luke have led me to meet some of the most amazing moms on this planet. Everyday (literally every day since we are at ACH every DAMN day!) I see Moms juggling with their special needs kids and their siblings bustling between appointments, working/carrying special equipment, lifting their children out of their wheelchairs and into their cars cause they have no ramp... I could go one and on about the challenges they face and the expenses they incur. I myself want to build the most amazing sensory/playroom for Luke but everything for a special needs child is twice as much as it should be. We have been thinking about building an addition so Luke would have that safe space to play in except if you figure the amount of money I spend on childcare for the other kids to take him to the hospital and not to mention the hospital bills alone, and gluten free foods, I don't think there is enough to make another house payment for the addition! I have been thinking about going back to work but I wasn't sure if it would be possible with as many appointments as Luke has anyways. So I think I have decided to try to occupy my time (insert your laughter) with a new venture and see how it takes off. I was at the hospital today when a mom I have met there approached me to help her in raising money for her son who needed a wheelchair ramp to get in his house. Now this isn't the first time this has happened I believe ever since I started fund raising for Clarabelle people have come out of the woodwork asking me to help them with their needs. I can't say no especially since I realize first hand what it feels like to want to make life easier for your child that you watch struggle to keep up or hold their own. I want to help all of them but I need help to do so. When I raised money for Clarabelle because 4 paws was a non-profit 503 organization big companies were willing to donate because of the tax exemption. So in order to help everyone who has asked me to I need to form a non-profit. So many people donated to help Luke get Clarabelle and what a blessing. As stressful as it was it was exciting and probably the must meaningful thing I ever did. I saw people give of themselves so unselfishly it was amazing. I met one of the most amazing people in the world by fund raising and her name is Suzan otherwise known as Gumball the clown! She is a professional clown who volunteers every Tuesday at the hospital for countless hours. Unfortunately the hospital doesn't pay or support all of the things she gives to the children she is strictly a volunteer. I have see her make a different in many children's lives. She wants badly to start her own clown brigade like the doggy brigade that is there. However in order to establish herself as part of the hospital they told her she needs to raise at least $5,000. She has also asked for my help. I hesitated asking my friends and family to give me $ for another adventure and I couldn't see how without being a nonprofit I could raise that much $. So if I started this nonprofit I could definitely help her raise the money for her great cause. Aside from meeting many people like Gumball, letters poured in after we appeared on TV and to this day I still receive mass offering and recently a present for Luke from an anonymous donor who I sent a Christmas card to. I guess I feel like one of the gifts God gave me was my strong will to accomplish whatever I set my mind to. My parents helped foster that as well always being very supportive. So I know they will support my printing needs (hehe and maybe they can actually write them off!) So I guess what I am asking is if you think I am crazy for wanting to start this venture. So far the only vision I have is to raise money in any way I can to improve the quality of life for any child or adult with any type of disability or illness. Now I know it sounds vague but that's exactly what I want to do. I want to help people when other organizations can't. My nonprofit could be a little bit of extreme makeover home edition where we could built spaces like playrooms and sensory rooms and ramps for wheelchairs and even vans! We could provide people with equipment like Rifton Chairs that insurance won't pay for. Although I am hoping for many private donations and amazing fundraisers I am hoping that some of these great companies would donate their equipment for my cause! OK enough with the rant - I need to know what you guys think and of course if anyone would like to be on my board of directors committee!