Saturday, November 27, 2010

Gobble Gobble

Thanksgiving has never been such a time of reflection and thanks for me as it was this year. I am so blessed by wonderful children and a most loving husband. I was particularly thankful thursday for Sam turning the corner on his illness and making a rebound. He slept all morning while we scurried around prepping for 14 person dinner and awoke as everyone arrived. At one point my mom and I thought he might have had a seizure but it was just because we could not get his attention as he was laying in his crib. Visiting with family, he was in great spirits and had tolerated a couple normal feedings of milk.. finally moving off the pedialyte to the millk. He spent about an hour of full busy activity and then basically crashed for the rest of the day.. it took alot of energy for him but he loved seeing all the relatives. I was further blessed  not to have to cook the bird this year.. my mother in law did the honors on that one. We had a great visit with everyone!

Yesterday afternoon was spent decorating with my mom with Alabama football on the TV and chili on the stove. A cold front had come through and so all in one day we went from 70s and 80s to the 30s which made it feel all the more fitting to do our Christmas decorating! The girls were fully of silliness as they could not wait to find the nutcracker box. Nutcrackers are their absolute favorite decoration at Christmas. As I drove my mom home last night I thought about how very very blessed we are that she is here with us... she has overcome soo much. I could not have gotten through this year without her.

Late afternoon we had a call that nearly threatened those good feelings as it was the home health company calling to say that they found out our insurance policy only covers up to $2500 per year of home health. Even as our policy has a $5 million lifetime limit.. not much covers help at home with an involved child. I had been praying so hard about this and it just feels like we can't find a way to make anything work in our favor. The company said full time home health would be about $180k per year which is nothing in relation to what is spent in an ICU at about $50 -100k per week and Sam has been in the ICU or NICU 5 times and for up to 3 months of his little life. They have tons of other infant patients that get full time nursing fully paid by medicaid. I just feel sick about everything. I don't know what to do differently to find the solutions. I am out of ideas and just plain tired. I need to work as we have been hit like a truck by this medical stuff and my not being able to aid in bringing in additional income. I just have to trust God to help us find the answers.

That evening we also had a wonderful visit from our good friends, the Riddle family. Greg was one of my closest friends from high school and helped bring Jason and I together in 9th grade... ahh that was soo long ago. They have a new baby girl and she was absolutely adorable. The babies got to meet each other and Sam was quickly entranced by lovely little Lillian. He wanted to touch her face and pull her to him. It was so sweet! He really has met few babies and it was so neat seeing his eyes dance at watching her up close. I am so thankful for good friends!

So today we are finishing up the decorations and hopefully Sam has a low key day so he has energy for tonight. We are planning to have some good friends over for a little potluck get together. Should be a good time. I can't recall the last time we had anyone over besides family before this week. It has been a while as we have been hermit crabs I guess. Prayers for all those families experiencing illness or a loss in their families during these holidays. Even with all the reasons to find joy, it can be a very hard time of year for many people.    

Tuesday, November 23, 2010

Getting some help..

This is obviously the week of blogging as I usually don't blog but once a week but this has been a busy and draining week for us. Today was especially notable though because it is the first day in quite awhile that I felt something good might happen to help us care for Sam. I met with a company about getting full time nursing care for Sam. YAY!!! I hate to have to bring someone into our home but I think I am reaching a point where I am spread far too thin and frankly emotionally and physically exhausted. I look in the mirror and don't recognize myself anymore..I look the way I feel for sure! I can't believe we have gone 8 months without getting this kind of care arranged before. As it is not yet approved by insurance I am not wanting to jinx us but I may soon actually be able to concentrate on one of a million things that have been set aside in doing all the daily tasks that independently seem not so bad but all together are rather overwhelming. Here are pics of some of Sam's equipment..just knowing how and when to use them require a set of skills I wish I did not need. It will be good to get a break from some of it if possible.

suction machine - sam does not cough or manage secretions well
mobile O2 Tank
O2 compressor - produces O2 out of the room air

Enteral feeding pump - pumps food through Sam's MicKey extension tube to his G Tube in his tummy

Nebulizer for breathing treatments

Heart - Lung (apnea/ bradycardia) moniter


medical cart of medicine, syringes and all the "junk"
They are talking about a nurse who would come 7 am to 7 pm and take over with everything Sam needs. I would be able to leave the house if I needed to or work with the girls on their projects.. wow.. the thought of even having clarity of mind enough to sort bills and make those necessary calls regarding all sam's medical junk.. priceless. I might even be able to work in some capacity to make a dent in all the medical financials.

Sam is doing pretty well this morning with some periods of respiratory struggling. He is very distended in his abdomen with all his usual constipation and slow gastric emptying. But he was smiling and happy and more playful than he has been for maybe he is getting a little better. It always amazes me how this bright and beautiful baby boy is able to smile even with the tubes and all his struggles. We just can't let him get sick because one illness is like a total crash of everything for him.

Bella has a half day and so I am going to put the girls to work on something constructive before they go stir crazy. I got busy with Sam and peeked in on the girls after lunch and they were playing puppet show with each other. At least they have great imaginations to keep them busy!

Just as I was posting the last picture and talking on the phone with one of our contacts at Early Steps (who provide his early intervention therapy sessions) about the nursing care info, I heard Sam's brady alarm and went running to find Sam was bradying again, clamped down and not breathing has been a several time a day occurance while he has been sick. Finding your baby greyed out or blue and in distress even once is like some kind of nightmare but having it happen over and over is indescribable. My heart must be beating off the charts during these episodes and I feel a little like a crazed animal trying to get the O2 on him. I have so much adrenaline racing through me that once I get him stable on the oxygen and stimulated and then calmed down I feel like I could pass out. That is why we need a nurse here. I hate being alone during these scarey times. I have to tell myself that God would not give us or Sam this life without a master plan even if I can't see it clearly right now. I read this scripture recently and it really fit with what I keep trying to remember.

John 9:1-3 NIV
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither, this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I really want to find the answers to why Sam has to struggle, but if he has been given more health challenges than most, I have to believe it was so that others would see the work of God displayed in his life. Through him we witness God's love every day.

Monday, November 22, 2010

Thanksgiving Week

Samuel is still fighting some kind of illness that is effecting him on many fronts. It started as congestion with cold-like symptoms and basically went into respiratory distress all at the same time. This was thought to be croup without the normal associated cough and would transition during the morning to easier breathing only to get far worse in afternoon to night. Then Sam became limp, weak and miserable. He stopped tolerating feeds and started exhibiting pain in his gut and a huge amount of gas in his tummy. He already has a slow moving digestion but I think it slowed down far more.

Today before we went in to see the pediatrician, I had tried the first milk feeding since doing all pedialyte for the past 24 hours... well we went to place him on the counter to be measured and weighed and the gas in his tummy caused so much pressure his g tube popped out all on its own. Ahh.. I can never get comfortable seeing that happen but at least I know what to do and I started moving rather fast at replacing it. I think the nurse was as suprised as I was. So his belly is overly full of gas.. not much room for food. Then a new problem appeared during the exam. She saw a double ear infection to top it all off.

So we are doing antibiotics and sticking with slow pedialyte and using the oxygen as needed. She suggested she could put Sam back in the hospital but I told her anything would be better than that which led to my breaking down and asking the Dr. if we could get the nursing help which in the past has been questionable for if we could get insurance to pay for it. I think she realized how exhausted and spread thin we are right now and she put me in touch with a service who is sending out their nurse and a director tomorrow to discuss 24 hour nursing or night nursing. Sacred Heart is doing the referrals as we were there not long ago. The woman freaked me a little when she suggested that insurance would pay for Sam to go live in a care facility in Plantation 6 hours away and that we could take the girls there to vacation and see him if I was interested in that option...WHAT?? - NO! That was all I could muster. I can not imagine a scenerio where our son would go live in a far away hospital. Home nursing is going to be enough.

1 Little 2 Little 3 Little Indians.. 1 Little Indian Girl..
Sofia had her Thanksgiving program today. Nana and Jason were able to be there to see her. Our cute little indian apparently sang her lungs out. The girls are very excited about the upcoming family feast. I am just excited about being home all together as a family for the holidays. I am setting aside all the worries this week to try to focus on them. I hope the nursing can help us to regain some kind of normalcy around here as it has basically been our lives shuffling around Sam and the cracks are starting to show. Everyone on Jason's side is coming to our house for the dinner. My mom is planning to see us over the weekend for some tree decorating, chili and football..Yay! I can't ask for more than that.. all in one weekend. I hope Sam will get better on the antibiotics and get back on some milk soon. I want him to get to enjoy his first Thanksgiving with the family. My prayers for tonight are for all those families that will be apart on Thanksgiving, and for the families that have just lost loved ones.

Bella's Soccer Gang.. We will miss those Saturdays!

Sunday, November 21, 2010


I was so sad to find out this morning that my music pastor's wife has passed away after her difficult battle with cancer. She was far too young. She will be greatly missed and was loved by so many people. I am praying for her family today.

Sam went back to the ER with Jason at about 2 am this morning. Yesterday morning we were excited when he seemed to be doing pretty well. I had planned to skip the soccer game but got a call towards the end that Sofie had a potty accident and so I headed down to the field. Sam seemed downright happy as we strolled out there so we ended up staying a few minutes and then joining the group for the end of year party breakfast. I was relaly hopeful that we had turned a corner on the breasthing but now in hindsight all the past mornings have been far easier than in the afternoons and over night. By 3 he just could not breathe well and even putting oxygen on when his color would look bad did not seem to ease it. Then after an afternoon feeding, he stopped tolerating his feeds. This is where the food backs up inthe syringe if we try feeding it bolus style or if we are pumping it in with the feeding pump where it is moving very slowly he begins writhing in discomfort. So we backed off on the food a bit but I began to fear he was getting worse so after much back and forth over whether to go or not, we opted to play it safe and go ahead down there in case they needed to deep suction or check blood gas levels. We are getting very little when we use the suction machine at home but he sounds so congested.

They did a chest X ray and saw that he was clear but hyperinflated and had alot of gas in his tummy which we knew because every time we vent him it loudly releases air right away which is not typical for him. They did not do much more for him but he had calmed alot while he was there so he came back home and then we started trying pedialyte. Over the last hour or so he has dipped back into some periods of stress again. SO it will be a long day.. hoping it gets better over the course of the next few days..but mainly praying to get him the food and energy he needs asap.

Friday, November 19, 2010

Hard Days Night

SO.. Wednesday night we had a crash of sorts for Samuel. We had given Sam his 6 pm feeding and then he seemed to not tolerate it as well and was incredibly tired so we put him down. When an hour later he seemed to be breathing a bit more labored and raspy I was concerned we may have pushed the bolus feed too fast for him and hoped he had not aspirated anything. We kept him upright and kept trying to calm him. It was the beginning of a horribly frightening night. A hundred times we asked ourselves whether to put him through a trip to the ER or all the way to Sacred Heart but then he would seem to calm back down and somehow we made it through the night. We employed every piece of middle-of-the-night parents first aid for bad breathing..took him outside bundled to breathe cool air... ran a humidifier.. used the menthol rub.. used the suction machine.. patted his back for hours but he was in absolute distress and then he was bradying too and changing to his scarey grey color.. so we put him on the oxygen by cannula. I was so bleary eyed and tired I hardly knew my own name.

Then in the morning I called our Dr and they were not opening till 2 that day so she advised we go down to the ER. By the time I got over there.. wouldn't you know it he sounded so much better! SO I felt a little crazy to have him doing better and still going into the ER. Well my Dr met us down there and said this was croup but as Sam does not know how to cough so we don't have the usual barky cough.. the secretions just sit in the large upper airway. Somehow this coupled with his trachea issues is why he can't breathe so he had a nebulizer steroid treatment and she brought the machine to us at home to continue there. We have used it on the girls in the past but it has been a bit of an argued treatment for Sam. The Scared Heart pulmonologist said steroid treatments can make tracheomalacia worse as it can further weaken the cartilage so...we hope this is not going to harm him. My pediatrician was so kind in offering to deliver it to us so we avoided another trip out that day.

The next day through today have been waves of doing pretty good to almost normal and then absolute crashing waves of distress. It seems to have no real connection to the nebulizer treatments or anything in particular. He just starts acting sicker, more puny and breathing gets so bad then color goes and then heart rate. We took Sam and all his equipment tonight to my inlaws for a visit so the girls could decorate their tree. Right before he went into some distress so it was nice not to be alone with the worries for a few hours. It is times like these when I don't like being alone with him because I am so scared he will have a major event and am constantly thinking of CPR and what I would do in that scenerio. The time I did the rescue breaths is still fresh in my mind and I am absolutely unsure if I would have the composure to do compressions if necessary. I wish we had help at home with a nurse during these times. If any other parent saw their child like this they would be hitting 911 so fast it would make your head spin.. but as this is something that happens to him..we just have to find a way to handle it at home or live in the hospital every time he gets a cold. I am going to have to talk further about this with our pediatrician.

Right now he is on the oxygen due to a series of bradys since getting home and trying to fall asleep. He is pretty miserable but not an hour ago he layed on my chest and almost seemed okay other than some raspy breathing and a vibration feeling in his back. I hate this darn cold, croup, congestion or whatever it is.

Bella had a Thankgiving luncheon and program today, which thankfully Jason was able to attend for us. I was worried she might be the only child without a family for the family feast. Tomorrow is her last soccer game and end of year party. I hate missing these little experiences with her as it is becoming the theme this year. This is just not our year. There will be plenty of years to do those things together though. Sam is sounding a little better..better catch some shut-eye.    

Tuesday, November 16, 2010


After a couple of downer days, this morning left me searching for rainbows and trying to focus on the good stuff. Right before therapy I looked over to find Sam had picked up a wooden block on his own and was holding it above him examining all the sides with the different pictures and letters. It was a big step.. and I felt so happy in that moment. He has been making progress lately with his hands and body but most of the things he has been holding and picking up were more ring like or larger rattle type toys. This movement required a little more dexterity of his fingers and he held it in such a stable manner that I could see he was proud of himself.

He worked hard in therapy doing developmental play before he started to send out the messages with his body that we had hit the limit. It was around that time that he seemed to lock his gaze on something and the therapist could not gain his attention for a short moment. I could tell she wondered if it was a focal seizure and then later she mentioned that concern to me. It was just a short moment but I felt this lightening bolt to my rainbow of a mood.. I started worrying as I realized I was a little later in giving his P5P dose this morning..was that why or was it being so tired or was it nothing at all. I let it go and as I went on with my morning I found myself realizing that I was not going to let that moment "steal my joy" as a wise woman once told me. I watched Sofie have a better day at gymnastics than last week, tumbling and balancing away with a smile. I enjoyed a nice lunch around the coffee table with my sweet mom and caught up with a friend from Gainesville on the phone. Today is not going to be shot with worry.

Monday, November 15, 2010

Outings and Bradys..

I wear my up and down moods pretty visibly lately and especially in my blog entries but I think being honest is about all I can control lately. I have to be honest or find myself buried by the act of putting on a perfectly happy face all the time. Not that we don't have light and happier moments, but we bounce from extremely thankful at being together with Sam doing well right now to feeling sadness and worry over what might be around the corner or at the bottom of everything. We deal with heightened moments over toddler issues made worse by them feeling our stress. But overall the girls have managed to come through most of this year unscathed and generally quite content. They periodically communicate seperation issues about hating how much Sam and I have been away this year, but realize we did come home each time and all was fine.

The main thing I struggle with is how to answer questions about how Sam is doing from people I run into during the day..there just is not a simple answer. So I usually say.. fine and that we are just waiting for answers from biopsy tests. They always remark on how good he looks because that has actually always been the case.. until he doesn't in those horrible moments. It is pointless to hash out for people the good and bad of the current status but for my own journaling here is where I guess we fall today in what I call the Good, the Bad and the Ugly..

The Good: Sam is very engaging as usual and does not seem ill right now although he continues to become taxed rather easily. He seems to be making progress though over the last couple weeks with his hand skills and neck control and trying to stabilize his body more. I feel like we are about where the girls were at 3 or 4 months in some ways but he is 8 months this week. He is taking some food and drink orally although it is an incredibly slow progress and he struggles and is left exhausted after the session. We don't know if his progress could be partly an impact of starting the P-5-P supplements 2 weeks ago. We are doing ok getting back into the swing of a somewhat normal routine with the girls and this weekend I got to have a little one on one time with each for an "outing" as they called it.. I took Bella to roast smores with some friends who were camping nearby for a few hours. I took Sofie to trek along the toy aisle tonight just to look and make her Christmas wish list for her grandparents and Santa. I did get some organizational stuff done with setting up Sam's medicine/supply cart in his room which felt good. We are hoping to soon secure a piece of tumbleform positioning equipment Sam needs for feedings and sitting. We used it in Atlanta and it helped Sam to feel more stablized and not have to focus on his neck control while eating or working with hands on fine motor skills. It was also great to help him safely ride in the wagon or larger strollers. Biggest ups for the week was the aid of my wondeful mom who is always optimistic and my inspiration.

I organized a medical supply cart so my counters could be cleared off..

The Bad this week: Sam had 3 bradys last night that kept us up worrying and running to his room each time. I have to say it is in the wee hours of the morning when I am sick with fear or worry that I get bitter about mental baggage. I absolutely should not blog at that hour as I usually just need to pray at the time and let my frustration give way to my faith and hope and letting go. In last night's case, I was holding in alot of frustration over a letter I received last week from someone who basically did not know or understand the depths of what we have been experiencing of late and made some careless statements and tried to make me pretty much feel like I was failing to meet the "perfect" expectations of wife, daughter, mother etc.. I see that it is easier for some to not try to really know your situation. Heck, I could never have imagined this turn of life myself and am not sure I would have wanted to entertain this possibility. God has blessed us with the right circle of support in our family, church and friends. I don't have energy for anything negative right now.

The other downer of the weekend was a realization that I really need to be able to work but we will be hard pressed trying to find a way to do it amidst still needing to ensure proper care for Sam if I had to leave the home part of the day. So I am now on a mission to make inquiries to a situation that could work for us. I am applying for a few positions which has me both excited at the prospect of something different to assign some focus and bathed in uncertainty over how I can make it happen as far as a nurse or nanny comfortable with his complexities. I am praying about it and doing my homework. Cost as always is the issue. The costs can not exceed benefits. The only other bad of late has been the waiting.. waiting .. and more waiting for those test results. Finding out the first piece of the puzzle from the spinal tap findings just made it worse as now we have even more questions. 

As for the Ugly.. Even in the state we find ourselves in over Sam, our problems pale in comparison of those we are currently praying over for friends.When I think we are stressed about Sam but here he is breathing fine today and in his own crib tonight while others are on life support, I think I have so much to be thankful for... I hate that worries over finding a diagnosis, or financial worries due to medical expenses has made me blind to the fact that at least we are all together under one roof right now unlike other families tonight. I have several people on my heart constantly that are caring for critically ill loved ones or are seperated from their families. I fear I have not been able to do enough for them because I am a bit too deep in our own quick sand.  I am going to make it my mission to change that mode in whatever small ways I can. I have always tried to do as a friend of mine puts it forward but I have never felt so stretched as I do now. We have been the recipients of huge levels of prayer and kindness and although I might not always have enough moments in the day to personally write thank yous to each individually, I know they must know we feel incredible appreciation. I just lately feel emotional overload and then when you come into contact with more sad news from other families experiencing a painful situation or when you just sit and listen to the news about the state our country is in or the loss of deployed military seems just too much..too much to process. So for now I am trying to process and help mainly with my prayers.    

Wednesday, November 10, 2010

Going Bananas..

It has been quite a full week for us. After learning from the people in Atlanta that his lumbar puncture results indicate a deficiency of pyridoxal 5- phosphate, a derivative of B6, we were asked to start supplementing him with a very large amount of the P-5-P. It is not the easiest vitamin supplement to procure locally but we got it and started it right away. I was rather nervous about the toxicity adverse side effects that can take place but so far no big problems. His urine has taken on a really particular smell and he began sleeping a whole bunch but I don't know if that is connected. There were days when  he slept 5 hour stretches only to wake for an hour and go back into another 5 hour stretch repeatedly. Could be a growth spurt but I am highly curious if it is a growth spurt brought on by some normalizing of his brain activity as this is what they have seen in others with this deficiency after starting the treatment. There have been babies with abnormal brain activity on EEG (encepholopathy) as Sam has, that after the supplements were in their system, they began having normal EEGs. Please Lord let that be true for our Sam.

 Normally your liver would pull this coenzyme derivative from B6 through a metabolic process but for whatever reason, Sam's may not be doing this properly. So what does that mean? Well we are still in wait of the results of all the testing they did with blood, urine, muscle biopsy and skin biopsy. They had also found his resting metabolic rate test to read as abnormal so something is going on but what is the whole picture..? We researched Pyridoxal 5-phosphate dificiency and a form of epilepsy dependent on this deficiency as this was the suspician of his specialist in Atlanta. This could explain many of his symptoms but not necessarily everything. There are genetic causes for this type of deficiency but there are many other causes as well. If his liver is having problems, that could be the source or if there are other metabolic issues, those could hold the answer. The mitochondrial disorders are the same way and it all could be down the pipe of one of those issues.. It could be genetic but  also could be from trauma at birth or in utero which has always been our worry as the Drs and the hospitals actions seemed concerning to us, from what I have read trauma could cause mutations to the genes for the first time in him... not coming down the line from us but actually as a traumatic series of events. There could be damage to his cells from free radicals that are created by an anoxic or hypoxic event that led to a systematic damaging of the systems. There is just soo much to question that my mind can't hold it all. I am at times..overflowing with questions.

My mom had a concerning day this past week when she all of a sudden experienced two seperate instances of disorientation and foggy to no vision in her one eye. My sister took her to the ER they ran CT scans and looked for signs of stroke. They have now set up a corotid arterial ultrasound for next week to be sure there is not a blockage of some kind but it seems rather strange to me that it take this long to get it checked by ultrasound.. but mom chooses consistently to stick with going on base, however limiting that is..she had surgery connecting vessels from her leg to her corrotid arterys for the facial reconstruction surgeries and so I would think there would be more immediacy in her case. I am concerned about scar tissue. Blood work showed her thyroid levels are way off. She has thyroid disease so I guess this is the other area that may have been causing the issue. The other thing that worried me was she said she thinks she experienced this episode once before back in April. I am just praying that everything is ok. She has been doing so well and has been very excited about some home improvements she has been making lately. I worry she is not always upfront about her health issues because she does not want to worry or burdan us with all we have going on.. of course she is my mom and never a burdan.

So the other thing that happened was Sam's biopsy site tests came back positive for strep infection but it did respond in the lab to the antibiotics and it seems to also have done so for him as well. He has been doing pretty well overall. He did have a brady episode on Friday night but came right back up in heart rate so just a small bleep on the radar. We were blessed by my friend Jen who watched the girls while Jason and I took Sam with us for some dinner out.. a rare event. So thankful for good friends! My sister and mom were also a big help to me this week picking up prescriptions and making it possible for me to go to Isabella's literacy day. She was Heidi and wore a dress I had from Germany when I was a young girl. It swallowed her up but she was pretty cute.

We celebrated my niece's 1st birthday and she recently began walking so it was alot of fun watching her walking all over at the birthday. Her dad is deployed and I know it was a hard one for my sister but they are returning to Germany next week and then getting reunited with him in the weeks ahead. Watching her daughter makes me remember so much of those same milestones with the girls. Sam's start has been different than theirs and on a different schedule, but he is making progress and will leave those lasting memories of the big moments too. He had a big day today in speech therapy, working with the eating and drinking skills. We went back to bananas which I am finding is his absolute favorite. He is swallowing and doing more with drinking especially. The eating is tricky but if I get the spoon far enough back and press on his tongue and hold it in there while the food is dumped in and long enough for him to trigger the swallow, then he does not push the food back out. It feels like such a small thing to us because it comes so easily but for him it is real effort and he gets so tired afterwards. He is moving forward though and I feel like we will get him there in time. One step at a time.

The big mind and time drains right now are coordinating the medical paperwork, backgound stuff and researching things for him when I need to be devoting more time to normal stuff. I am trying to find out about a deemed waivor for Sam to receive secondary benefits as they have deemed him fully disabled but because we own our own home and we acutally have an income, we don't fit social security disability parameters. We don't need an income for Sam but we need to be sure he has access to the care he needs. In this country you are punished for being able to afford health insurance.  With each child I forked over thousands for each delivery after insurance paid like $20k while the mom in the bed next to me paid nothing. Not that I am mad she is not paying anything but when you are paying $1600 per month in health insurance, you would think Sam would be assured the care he needs but no.. if he becomes seriously ill again, we won't necessarily have access to the nursing etc that medicaid would provide for other kids. If he needs a wheel chair, insurance will likely not pay for it as there is a list a mile long of what they don't cover..and these are the things I am just scared to death about. What if insurance costs go up even higher as they did last year for us by nearly double.. Just when you think you have done everything by the book..have everything financially under control, doing everything possible to make sound decisions, something happens and you just feel so broadsided.

I had planned to return to working after Sam's arrival since taking time off when my mom's surgeries and the girls had taken the lead. I just needed to help contribute as every month is different when you are self employed like Jason. It is such a catch 22 though now..because now we really getting hit hard by Sam's demanding medical needs but I can't leave him with anyone due to his health needs to even go back to work. I have to figure out a way to do all that a stay at home mom does naturally along with caring for Sam's unique needs, and find a way to help with financials.. seems like something has to give. I thought it was tough when I was working from home with 2 toddlers under foot but boy I am a bit between a rock and a hard place now.
 I am just praying for the right avenue. I wake in the night thinking about what ifs and find myself coming back to the same answer..there is never enough..never a perfect solution to an unplanned situation, God wants us to let him help us figure it out. I know we can't do this alone.. We are soooo blessed I know and have always known that we have gotten to live relatively comfortably but boy..I never planned for the turn of events of having one baby boy.. one sweet, defenseless, baby boy. Never knew how much more complicated life could become. But he is a gift and I am so thankful to have a complicated life if it means I have his sweet face spitting his bananas back at me. :)

Prayers this week mainly for my friend Robin who is away with her Dad in Houston at MD Anderson fighting for his life. He is on a ventilator and in critical condition. He has fought many health problems for so long and my prayers are that he not feel pain and that he feel all the love around him. I am praying hard for Robin who is trying to be so strong, a true daddy's girl. I pray for her own health through this ordeal and that she and her family have God by their side during this hard time. I know her and her mother are very tired and emotionally drained. It is so hard to not be able to help your loved one. We have so many friends in painful situations and with struggling loved ones. Our prayers are with those families in situations we know too well.

Wednesday, November 3, 2010

Update - found the meds

We got the meds at a local health store and are watching Sam's progress. Prayers please that we have no major adverse toxic effects of such a large dose.

BIG Day Yesterday

Yesterday was one of those big days where at the end you can't sleep because your mind is absolutely too tired yet spinning from the chaos of the day. Sam had some puss come out of his biopsy site with some redness and pain so I took him to the Dr. He was prescribed antibiotics and they did a culture. He was not running general fever so for that I am thankful. It was a busy day of therapy and picking up kids, voting and a soccer game that night but we managed to squeeze in a picnic at the playground park which helped to run off some of Sofie's boundless energy. Right before the soccer game, amidst crazy stress of feeding the girls and getting Bella into her Soccer uniform.. and I must confess that included pulling her jersey from Saturday's game out of the dirty hamper because mom is behind on laundry..but all of a sudden the phone rang.

I had to hush everyone to process who it was and what they were telling me. It was the Dr from Atlanta at the MNG lab where they are searching for answers for Samuel. It was 7 pm there and they were calling because they did not want to hesitate in calling us with data pulled from the lumbar puncture (spinal fluid). It is the first test that is back and apparently everything else takes 6-8 weeks maybe longer but it told them that Sam's Pyridoxal 5-phosphate was deficient and that this is a serious dificiency that can cause seizures, neurological damage (encepholopathy) which is something we have been told he shows on EEG, and that it can be linked to many other problems. Peridoxal 5-Phosphate deficiency can apparently be caused by different problems and in his case they don't know the source yet or if it is just part of his problems. There is a recessive gene issue where both parents have to carry the recessive gene which can be linked to this but it also could be part of a larger metabolic issue I guess. She went on to tell me there is a treatment but he would need to be watched closely for any toxic side effects. We basically have to start giving him large doses of this vitamin P5P, a coenzyme of B6. So we have been told to start at a dose of 100 mg 3x daily (300 mg). I have read about cases where within minutes the kids who have this dificiency start showing normal EEGs and start doing much better. Of course Sam displays many different symptoms so I don't know if all are related to this piece of the puzzle but I am hopeful we will see positive results. I am having to put aside my frustration that this was never discovered earlier.. I don't know how many times a spinal tap was dicussed and never done and that was far earlier at 1 month of age. The research makes me sick as it says that if caught early enough long term damage can be avoided but in later cases kids have shown decreased neuro capacity and speech and hearing problems, vision issues etc.. I just feel sick..

So then she tells me that the stuff is available over the counter and can be crushed up. She also gave me an item to take off our long list of things they are looking for in the labs - cerebral folate issues are off our list. She also told me that our resting metabolic rate test which was done in Atlanta was abnormal. This was the test where they put him a tent and passed air through it while he was sleeping very still. Abnormal can mean many things but basically it tells them to look deeper into the metabolic chain. She is hoping the muscle biopsy tells us if there is a problem along the chain of his mitochondria or of a metabolic, myopathy nature. By this time I became keyed up and nervous when I had been staying relatively calm. So I raced out to publix and found out the only place I am likely to find the P5P I need is at GNC or Golden Almond or somewhere like that. Jason raced over to GNC before they closed after the game but to no avail.. so we bought some online and had it shipped but that feels like it will take forever so I need to work on finding it locally this morning..I don't want one more hour of neuro damage to be going on that is preventable. I am just sooo angry that we did not see this earlier. The absolute crazy thing is that a cousin of mine had emailed this summer about this type of deficiency being its own category of epilepsy of which I said I did not think it could be it since we had so many other issues and that at the time they had decided he was not having seizures since they had not captured any on EEG and since the found the tracheomalacia which they thought was the cause of his bradys. Now I am reading that this vitamin deficiency could be responsible for the bradys as well as seizures and the pauses of his asystole.. UGHH. I am just sick.

At least God is answering our prayers for more information and shedding some light for us however hard it is to hear. I am so thankful that God is working with these smart physicians to bring about some answers. Now I just got to get my hands on the meds to help him. That pkg can't come soon enough.. why don't we live in a big city where this stuff is more readily available? Online it looks available in every vitamin shop in larger cities. 

Lord, please give us hope that Sam won't suffer lasting damage from this deficiency. We are in need of patience and calm and peace while we await all the lab testing results. We are so thankful for the gift of this new knowledge although we don't yet fully understand the larger cause. Please help us to access the vitamins he needs as soon as we can. Thank you Lord for Samuel and giving us a chance to help him. Please lift the names and families that you know are on our hearts right now for all their struggles and pain.  Amen             

Monday, November 1, 2010

Spooky Week..

I awoke this morning to find two silly girls awake since 4:30 am and tasting the candy contraband.. I am already saying my prayers for their teachers! They are going to eventually come off the sugar high they induced by stealing into their bags this morning before I discovered them..I had put the bags up on a high shelf and everything..resourceful little ghouls!

So Halloween week was a mixed bag of tricks and treasures for us. Halloween is quite the perfect analogy for my life this week. I am living in the "fun" house with the crazy mirrors and suprises around every corner but sometimes I also got to regress a little and get caught up in the good giggly moments of which I have found a new appreciation.. much like witnessing the joy of a little one totally transformed by some fabric and face paint.

The beginning of the week was mainly devoted to trying to get our life at home organized again after being away. I can't quite communicate the mind space stolen by all the medical paperwork, insurance, research, and inventory of med supplies, prescriptions etc..There was a time when laundry and carpool and little girl needs and school functions and halloween treat bags and party food and mom meetings and bills and all the other norms of busy momness seemed alot and sometimes I have to just laugh when something absolutely can't be done or falls through the cracks. God is in control..I am on autopilot. So the key word for the week is.. priorities. Is it all the important that Bella forgot the bow for her hair or that dishes were left Was it worth it to dress up as a crayola crayon for Sofie's class trunk or treat parade and decorate the car for fall? OH Yes - her smile was priceless. I also had the chance to help in Bella's class with her fall party. It was such fun watching the kids interact with each other. Those are the things I don't want to miss in the midst of all the stuff that has been going on with Sam this year.

I had a wonderful lunch this week with a couple of friends (Julie and Ashley) from highschool. Julie's baby boy Benjamin was adorable. If Sam had been awake for 5 minutes he would have enjoyed meeting him. Benjamin had a tougher start himself, having arrived a little earlier than scheduled but he is doing great and is such angel. Holding him for me was a reminder of some of the things we are still working on with Sam. That can be hard for me at times. But I look forward to feeling Sam's core strengthen and his legs extend pressing to bare his own weight on my lap. So we have goals. I also want to hear more babbling and for the feeding orally to happen for him, but for now I am very pleased by the steps he is making. He is doing alot of passing of toys from hand to hand and tried out a new toy which required some real neck strength. He is working with the "cuppy" cup as we have named it and with eating solids..he fights the swallow so hard. I just want to make it easier for him. How can something that seems so simple be soo hard?

I did a garage sale at a friend's house also this weekend, which was fun and a good way to clear out some of the clutter. I have to get rid of it in order to clear my mind and to be able to better handle life in general. Simplify.. Simplify.. is the name of the plan. After living on and off half of the last 7 months in hospitals and ron mcd houses I have learned that I require very little to survive and not much more to be happy or comfortable. I think God never intended for us to live amidst this much JUNK. You don't win if you die with the most just die quicker. I cry for those families on the Hoarders show because I tell you..there must be some serious pain laying beneath all of it. So I sold some stuff and other than Sam having had some breathing issues after being outside for those couple hours, it was a good morning. I think he had some allergies but he needs fresh air.. such a hard thing to decide how much exposure to give him..He needs experiences and to enjoy fresh air but it seems his tolerance for anything outside of home is pretty low. His eyes get red and he starts laboring more with his breathing and just in general seems somewhat stressed. He seemed fine that morning but two hours later seemed to take a turn for the worst for the next 6 hours.Ever since he has slept alot and so we have played things low key for him. A little allergies for the girls would be no biggie, but for him.. I fear could mean an absolute shut down and yet another trip to the hospital.

The girls had several outings for trick or treating on saturday with friends and sunday with family. They had a great time trying on different outfits out of the dress up bin. So glad we did not buy a new costume..they want to be something different everyday. :)

I am pretty sure at this point that many things are not going to work in our daily routine which saddens me because some of them are things I love like singing in the choir or being part of the leadership of my mops group. Some things I won't miss are the constant need to have our kids involved in every activity..It is probably good that we have slated to choose one extracurricular per child regardless of whether it is because we can't put Sam through all that running around town.

The sermon on Sunday was all about perseverance which seems very fitting to my prayers lately. I have these periods where I am not sure I am equipped for perseverance and then I meet someone who has overcome or I even think about all my mom got through or how 15 years ago when my dad passed I thought that was about the end of my whole world. We moved on and rebuilt our life. This too shall pass. Pastor Larry spoke about finishing the race of life and laying down all our weights (sin) in order to be able to do it. He said these hard times can make you better or bitter and I hope to become better, stronger and able to look back on this as just one hill along the journey. .Right now is just an uphill part of our race and I have no idea of the path ahead.. a map would be nice. I liked a saying that came from an excerpt from a movie preview for Secretariet (a horse movie)..

"The victory is not in whether we won the Gold Cup, but whether we gave our heart to it."

I hope we always keep our heart in living this life..whatever stage we may be experiencing. As for Sam, he continues to grace us with his beautiful smile. He must be the happiest baby I know! I am praying hard for several close families with loved ones fighting cancer. I am also praying for my husband's grandpa who has had a tough year and his sister who is coping well with alot of new medical changes after getting diagnosed with MS. There seems to be hard times and health issues everywhere.