"That mom"

So I haven't blogged in forever and there is so much to catch you all up on. Hopefully you are all friends with me so you can read my daily status updates. Today I just felt the need to blog, perhaps in need of a good vent. I had a home visit today with the Ohio Homecare Medicaid Waiver this is the program we qualified for that allows us to have nurses help us take care of Luke. As she began to ask me questions about what has been going on in the reason months I started to tell her. Most days i am strong and i can talk about it all as if it is just another day in my life but as I began to explain the new diagnosis and the tests we are awaiting and the possibilities of the future I just lost in. I know the poor lady did not no what to say to me and all I kept saying was I never wanted to be, "that mom." Many people say things to me about how when they hear my stories they remember not to take things for granted they remember to appreciate things and most people are surprised when I say "YES Everyday i am grateful for the blessings I have - the health we have- and I see families everyday when I am at the hospital I do not want to be" usually the children on the dreaded 5th floor - the cancer wing. It's an amazing place but a floor i only ever wanted to see from afar! I too count my blessings and never ever wanted to be "that mom." I can't imagine the pain they must feel. For a second recently I have felt it. It has taken a long time but I have accepted Luke is not like everyone else the dreams I had for him when he was inside of me I have had to alter and make new ones. But even though during a 40 minute seizure we have been to a place where I know he could have left me it was only a place a temporary set back, a temporary scare , and we got through all of those seizures. But now reading and hearing what I know know of his new issues I know I am becoming one of "those moms." I have read the words fatal, the places where they mention that kids don't live long, the treatment options of bone marrow transplants. I am becoming "that mom." It's frightening to me because I worry about who I will look to to help me appreciate. I liked us being just that complex kid with no life threatening diagnosis. But now I am becoming, "that mom" I feel like there is no looking up anymore, no hope, nothing left to help me appreciate what we do have!

Google ......and ........

Tonight I sit here awake while Daddy and all 3 kiddos and 2 dogs rest comfortably as I usually do and this could go on for hours. It seems I have an addiction where I would love to admit to playing on facebook and mindless facebook games my addiction is far worse. I sit and google words with an included "and" in between waiting for that magical diagnosis that will fix him. I know its crazy and some of you reading are probably judging me and asking yourself when will I just accept him. All I can say to those in my similar shoes is it's not the delays or behaviors but the health I would like to fix. Those of you with healthy children will never understand the anguish as I sit here hours on end typing in the 1,000 of possibilities of those 16 diagnosis's. Its crazy really I don't even know what to do with the information and similar children I find. I feel like I want to study the special children like they are a science project and group them and see what medical issue is from what. Why can't he swallow, why are his liver enzymes so high, why does he have 100s of seizures. Luke has started waking screaming at night again and just when sleep was going so well for the last weeks. It seems an endless cycle. But what brings me to the computer day after day is no longer the seizures for those I have accepted as something that I will not figure out alone and in time doctors will have a better understanding of why. Maybe not today maybe not tomorrow but in time and hopefully in his time. But for now I accept I can not fix them. But this stomach thing has made me sick with worry. Its not like the unsteady gait he waddles around with , a gait that he has come to overcompensate for. It is instead a scientific test a biopsy actually showing that his small intestine is not healing despite what we have been told to do. He was diagnosed with Celiacs and after multiple biopsies and an expensive genetic test it has been confirmed. However after almost a year of eating gluten free foods there is no healing. So in an attempt to try sometime we have been instructed to remove all milk and milk protein. It seems now that his foods are even fewer and Mustard Seed must be the richest empire in the world. The fact that they can get 2.39$ for a disgusting single size serving of completely gross yogurt that contains no milk or gluten, or 7$ for a small bag of pretzels is completely absurd to me. But we started giving him Vegan cheese (imitation mozzarella) and he does not particularly like it. When I spoke with the nutritionist about having to change all of his like cheese, yogurt, milk etc she even mentioned the possibly of removing all of his foods by mouth and doing a very sensitive predigested formula through the tube. To me taking away the joy of eating seems so cruel and exactly what we didn't want to happen. It took him nearly 2 1/2 years to learn to actually chew his food. While most moms marvel at a child learning to walk I marvels at his "good lateral chewing." But then I hear him say if they can't heal the stomach it can lead to far greater problems for him. If it isn't already a great problem. Their are conditions that present like celiacs that aren't like the T cell lymphoma that keeps popping up in the Google search or perhaps its the other 5 nasty conditions that come to the screen. I already think the doctors think I am insane so how do I ask the questions I fear. The biggest one that for everyone seems crazy but for me seems like such a reality is the D word. I keep thinking what if this is just his stomach failing in a way that can't be fixed. What if they can't help him and this is it. It's maddening to think about it but I can't keep my mind from going there. Until someone can tell me why he can't be healed and have a healthy tummy and perfect blood values than I will continue to Google and worry. Lately I keep thinking about starting over completely taking him to a whole new doctor and giving them no history and having them look him over from head to toe , inside and out to see what they come up with. I don't know why I continue to doubt the doctors I respect and like but I am so sick of them saying things like, "This is Luke anythings possible" or "I've never seen anyone quite like Luke" or "We never come up with any answers but clearly we have a problem" Its maddening, frustrating, painful, depressing and makes me doubt my faith in everything! So with all of that I will go back to my Google search because I have just thought of 2 more combinations I have not done yet! I'll keep you posted on what I find!

The dreaded tube

Okay so its been a completely busy month and just today i had 4 appointments. I have been going crazy filling out medical stuff for school and we also got a letter for potential home waiver slot. So I went to Job and Family Services and have a second appointment with a casemanager soon. I am trying not to get excited but some nursing hrs would be a blessing. Lukes G-Tube was placed this last week Monday after 3 years of contemplating this surgery Daddy finally agreed. I thought he would be okay after the surgery but he clearly is not. He doesn't really want anything to do with it and when I say "look at it - is it suppose to ooze or be this red" he looks sick and says I can't look. So maybe more than anything with this decision is the hurt he feels knowing we did this to him. I am past that I know I did not do this or any of this to him. I never wanted a child that has to HURT in this way or any of the ways that he does. God gave him to me. The day after surgery was rough and I think wow this is only a G Tube surgery some kids have it so much worse. But again I find myself wondering why there has to be so many "HURT" children in the world. Why would he want them to hurt? I keep wondering if I am missing his message because somedays I can't see past the HURT! After we ran Lukes first Tube feed the night after surgery his poor belly grew distended and hard and he was screaming in pain. I really thought oh no they put the tube in the wrong place. But it turns out they just tried to feed when his bowels weren't moving yet. The morphine he had and I kept asking for cause he seemed so uncomfortable was actually slowing and putting to sleep the digestive system so he was just not ready to eat. The second day went better he tolerated the feed but was still very sore. He still seems sore as he is healing and now we are dealing with the rate and the dose and pump malfunctions. I had to switch all the meds to liquids and CVS is still working on that. Daddy is coming around and I just think he needs more time I really feel in general he hasn't made it as far in the grieving process we have had to do in the last 3 1/2 years. I am coming around realizing the life with baby is not what I would have ever imagined. My diaper bag is not filled with toys and books and Gerber puffs but instead its filled with rectal suppositories, gluten free snacks, packets of simply honey, and now gauze and syringes to flush his pump. He is now doing 4 feeds a day instead of 3 during the day and one at night due to the beeping was waking him and I refuse to interrupt the decent sleep he has been getting. He is still eating well by mouth and drinking and actually seemed more hungry. He looks so cute with his pump strapped to his back by this minibackpack if only there wasn't a gaping hole in his tummy with Tubes hanging out! It has been hard for me too as you can see I feel responsible cause I have been left to make the difficult decisions alone somedays with little family support. But thank God for my friends who tell me they know I have made the right choice. Today I am feeling better about the decision the past 5 days have varied. However, I have anxiously been waiting for the doctors to call and tell us the results of the biopsies and it appears that in also a full years time Lukes stomach is not showing any improvement despite the gluten free diet. At this point the doctor still has to believe its still celiacs but is looking into refractory celiacs and other rarer things that could be happening. He must have named 10 different scenarios which all lead to more testing. But the goal is to heal his gut its the small intestine that its the worst. He will not absorb any nutrients if they can't heal his tummy and not mention what it could lead to if they don't figure it out. A suggestion at this point is to remove milk and all milk protein and possibly fructose (we are going to test for that) - Apparently some children with Celiacs have a harder time healing if they lactose issue. I cant imagine being one little person and having this many things wrong with me. It seems so unfair. At least if God was going to make him complicated why couldn't he make it easy for the doctors to make him feel better why does he have to be such a mystery. It SUCKS! Well I am extremely tired and could use a good cry tonight after another argument with Daddy over the tube, bad doctor news, 4 crazy appointments tonight and more to come 2morrow, I am so tired- More Emotionally than anything- While Luke was in ACH getting his Tube my Grandma Vanek was in St. Vincents ICU. So I was driving back and forth between the 2 hospitals trying to spend time with her. On her 95th birthday she got moved out of the ICU and into a normal room and has returned to my moms house for awhile to regain her strength. I know her time will come soon for we can't live forever but I love her so much we have spent so much time together through the years and she has taught me everything I know. Her and I are very much alike! We have made great memories together ones I will hold dear. Tomorrow after our appointments I plan on taking all the kids to visit her and I can't wait! I am tired and this vent has helped tremendously. Have a Happy Thursday everyone! Sweet Dreams!

Having second thoughts

What a busy week Luke had his appointment last week with Dr. Sand Loud his developmental pediatrician. (Very sad appointment cause we really like her and we found out she is leaving). It was weird I really really wanted to tell her I didn't think his catapress patch (med for hyperactivity and behaviors) what working during the day anymore. I mean I have seen it work on the highchair or the shower stall when it falls off him and sticks to a surface it's amazing the shower stall or highchair don't move all day. However, when it's on him that's a different story. The decision to even put him on one of these meds was difficult enough. It took alot of tweaking the dose and changing things before we even settled into a right dose. It has done great for night sleep, before he was only making it 4-5 hrs and not even in a row, now he is going much longer. Most kids on his patch change it every 7 days we tried that but by day 3-4 it was wearing off so we were instructed to do every 5 days. Then after our big care conference with all the doctors we talked some more about how he slept so well the first couple of nights that the doctors agreed we could change it every 3 days. Another prime example of how he doesn't metabolize his meds correctly. Well so back to the appointment Dr. Sand Loud saw him for our 40 minutes appointment (another reason I love her cause she spends so much time with him) but she brought up the fact he seemed very hyper and active and that we were already at the highest dose of catapress per his weight and changing the patch so early that she thought it was time for a new med. I wanted to say something about this so bad so I was so relived it was her idea! Now for the reason for this blog the drug choice Risperdal! As a special education teachers I had many kids on this that tried it some it worked others not so well. It seems such a strong choice for him at only 3. The drug is in a completely different class than Catapress and works very different and I am so worried about the change. Terrified that we will go back to the days of no sleep for days on end. But than I think about the fact we are becoming more and more homebound and his behaviors are really starting to affect us as a family. We can't really take him anywhere, he is climbing on everything, never still. Neuro chalks it all up to the microcephaly, just like everything else, "Kids with microcephaly don't require alot of sleep" "Kids with microcephaly can be very active!" Ugh yes I know, kids with his type of neurological conditions are alot of things I just want to scream because I don't need you to keep telling me. Really I get it I live it you don't! My biggest fear is that Risperdal lowers the threshold for seizures (something we have a little more control of lately). So he is sleeping and hasn't had a seizure in 6 weeks and you want me to change his meds. I want so badly to have a child I can take out in public and enjoy time with my family but will that ever happen. I mean I keep hearing the "kids with microcephaly etc. etc." and then I think is a med change even worth it! I know I have already heard the opinions from many parents who have tried it and there is no way to know if it will be "our magic pill" or not. All I am left with is the hope that it may make things better. The fears though they are there as well what if the seizures come back with a vengeance. I love our fireman but I don't miss seeing them at all hours of the night. As I sit here and realize how I am rambling on and on I can't help but think about how I wish the decisions in life were more about what type of cereal to buy the kids and less about what if I make the wrong decision and a seizure God forbid takes his life! I hate having his life in my hands everyday. I know I don't control that but its such a hard concept to accept. So much easier being Daddy his thoughts on all of this is, "you do what you think is best?" Well my answer to him is easy for you to say, I could make a decision that could hurt him! Well the med change won't happen til after his G- Tube surgery next week anyways which was a start move by my favorite doctor. At least we'll know if the behaviors are from the med and not the surgery! His surgery is scheduled for August 9th, another hard decision that I have been trying hard not to regret but he had another very tired day today and didn't want to eat so on these days I don't regret that decision. But I am a little nervous anytime they have to but him under, terrifying actually. He has recently had the malignant hypothermia precaution due to the possible mito disease lifted so at least it shall make recovery time easier. Although after discussion with other drs. this week about the 2 weeks that he won't wake up period I am being urged to seek a second opinion about the mito stuff. Just this week I learned about some other mito kids who also have Factor V Leiden, which is the clotting condition I was diagnosed when i was pregnancy with Lily. So I have spent alot of time on my favorite medical sites reading up the connection it could have with Luke. Although i have been told over and over they don't test kids whose parents have it. I have decided to argue this at our next mito appointment with Dr. Cohen. I have been rightbefore and if I'm not I can live with sticking him one more time for the chance that we find his mito or a Factor V problem. With him not being verbal it makes it so hard for me to know how he is feeling. Perhaps I am missing some signs. But the constant sleep and low energy are a big mito sign one that I just can't ignore. Okay enough about me but for all of you who read this today can I ask you to say a special prayer for a dad that got on the elevator last week at ACH with me. Through his tears and in speaking to the hospital Chaplain I overheard him tell her, "that he is has said all the prayers in the world and that they are not working, and something to the affect of she will probably not make it through the week" I wanted so much to ask her name or tell him I would pray for her, but the lump in my throat was there and I tried to hold my tears in until he exited the elevators. These are the moments the decisions in our lives that make parenting a child with special needs so difficult, the emotions are something I won't wish on my worst enemy. So strong! So pray for his that little girl today as Heather told me God knows her name!

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!