We never intended to grow our family beyond the size of five. 'Family of Five' had such a nice ring to it. You can actually all fit in one sedan, right? It is sooo much easier to request a table in a restaurant..and you can even make a booth work with a chair on the end. As Jason and I were each raised between two siblings, three felt somehow the right fit for us. Then to experience the journey of this last year and a half.. well, let's just say I was feeling the limits of my mothering abilities and was further convinced of the beauty in the number 3. I would watch my sister rangle her 4 kids (all under the age of 7) and think to myself.."How is she not losing her mind?" Now here I am with #4 due before Bella even makes it to age 7. Yikes!
But as God has often taken the wheel during the peaks and valleys of my life, I know he has always brought me through and in the end I have always grown to fill the role he intended, even if it sometimes included a little kicking and screaming along the way! So.. when I started experiencing an unusual level of exhaustion, I went through a period of panic weighing how we could possibly be expecting.. so unexpectantly. At first, I did not want to believe the results on that pee stick, yet it was hard to deny the dark plus signs appearing on multiple sticks. It seems I am about 10-11 weeks along and as I am somehow showing in an absurdly obvious fashion, I feel I should start sharing the news.
I won't actually be seeing the Dr for another week as it has taken me some time to decide about who to use and how to best handle the prenatal care of this pregnancy. After an incredibly complicated end to the last pregnancy, we want to be sure that this child's care and my own are in the best hands and with a plan that will ensure the most healthy outcomes. For now, I am trying to get past what has been a pretty rough 1st trimester with all the exhaustion and morning sickness or all-day sickness, that is. I am sure some people think I dropped off the face of the earth.. since there have been days I could hardly leave the house.
The last couple weeks have included some special days too. Friends of ours were in town for a few days while staying with our other good friends. Our families had some fun together swimming and catching up. BBQs and golf were big hits as well as an interesting trip down to the beach on a most soggy, rainy day. I have tons of pics to download but here a few highlights..
After that busy week, we made a trip to Atlanta as a family for Samuel's follow up with various specialists. While I took him to the appointments, Jason took the girls over to the Atlanta Zoo. It poured that day and the girls were soaked through and through. They hardly noticed as they were just tickled to visit all the animals. It would not have been a trip through Atlanta without a stop at the Varsity..memory lane at my dad's favorite place to eat chili dogs before a ballgame. We were also very excited to see my friend Jenni, who not only found time to visit us at the Ronald McD House but also joined us on our trip over to the Fernbank Natural Science Museum. I may have to post more pics of this experience later but needless to say.. Bella only had to enter the Dinosaur exhibit and she was in pure heaven.
As for the medical outcomes of the trip, I felt overall that we made few changes to Sam's medications, routine or therapy, but that we were able to update these Drs on what our child looks like on the better end of his health spectrum. He has such extreme transitionary periods of wellbeing, making it hard for Drs to diagnose, understand or treat him. When he looks good, he looks sooo good. During these periods, people would have a hard time seeing all that lies below the surface. When he is not doing well, it is the most horrible thing to witness. As much of his life is summarized in a phone book of medical records from one crash illness to another, and as most Drs look at records first, it can be easy to surmise that his prognosis may not be so good. I often wonder what the physicians imagine before they meet him when records are sent over first. Then they all seem to show such suprise upon meeting the bright and beautiful, engaging little man that arrives in place of that patient they read about with so many issues. You see him on a good day or in this case, you meet him after the longest stretch of decent health ever.. and you are astounded and greatly encouraged by the difference.
Since he has done so well in recent months and is making so many new strides with development and movement, I had many questions about whether his condition might not be progressive, degenerative. The answers I got from his Mito specialist were mixed. Since they really have yet to fully identify a source or exact gene to hang a "primary" Mitochondrial Disease diagnosis, we are left to let Sam show us what he is going to do. They did request additional blood samples from Jason and I as they found some curious abnormality that is being investigated further. This worried me even more about the baby I am expecting. Apparently their work at studying his samples is constantly ongoing. We talked about how within the diagnosis of Mitochondrial Disease, there is quite a range of prognoses and clinical findings. There is a 20% figure attached to those cases where things are going to progress in quite a degenerative pattern with some waxing and wanning of symptoms along the way and these cases carry the highest risk of fatal outcomes. Presenting earlier in life does not help the situation. Then, however, there is another 80% of cases where the patient does have periods of regression and "crash" episodes but if they overcome the bad periods they continue along on their upward course albeit at a different pace. For these cases, they may have periods where they can't walk or are hospitalized for one thing or another, but then also have periods where they are seemingly normal and doing fine. I don't know where we will fall and frankly, I am still perplexed about what they actually do know difinitively. I do feel having a negative outlook will not help. We have had a few Drs that took one look at the suspected diagnosis and gave us pure gloom and doom feedback, others were not convinced of the diagnosis, and then others think we will teeter along with dips but hopefully manage his symptoms. Our mito specialist says this is all relatively unchartered territory and research is ongoing. Our local Drs just don't see this enough to say one way or the other.
SO.. on to a new and exciting topic.. Sam is now super mobile! He is crawling! First he got to a sit, then he lifted up on all 4s, then he army crawled/ scooted on tummy, now he is actually crawling up on all 4s. It does take him quite awhile to get across my living room but, by golly, he has figured it out! I felt like Professor Henry Higgens in "My Fair Lady" when Eliza figures out how to properly pronouce, "the rain in spain stays mainly in the plain".. quite a moment around here! He has even done a full pullup of his whole body weight at the coffee table from sitting postion with his feet off the ground. He is amazing... and then he is tanked and sleeps all day long. One day,
On a really sad note, we just found out due to strange insurance contract issues that our physical and occupational therapists have with BCBS, we will be losing them for Sam's therapy. We will be getting a new physical therapist, but ours was wonderful and I am concerned about this shift effecting his progress. It seems we are not getting a new OT and on this I am quite concerned. It seems we are in a disadvantage because we have an insurance policy for Sam. The hardest part is our PT has been with us since the beginning and now just as Sam is making such progress.. to lose her is very hard. Everyone agrees that Sam can not be exposed to the environment of their busy clinic, so we are between a rock and a hard place. BCBS, our insurance provider says she can not provide us services in the home even if they are not being billed. It is crazy but somehow, a therapist with no BCBS affiliation can come in..and I can't risk illness for Sammy in a clinic 5 days a week.
Speaking of PT, the advice obtained from the orthopaedic appointment in Atlanta supports that Sam could certainly be placed in a stander or make use of assistive devices as he could see no reason that his bones or joints were unable to support him. The Dr. did say Mito kiddos would be at great risk of severe scoliosis if they were unable to keep their bodies erect due to their general muscle weakness or power supply issues.. but that would be further down the road.
As for the GI follow-up, I am further convinced that his Dr is a perfect part of our team. He seems to even want to lead it. He has a great bedside manner and is a plan maker. He draws me little pictures to explain his ideas and he is optimistic about good outcomes. The new plan was to totally clear out his system with a major dose of miralax over two days at 4 full caps a day and then stick to a daily routine of miralax and colace unlike our current practice of laying off when he has a liquid dumping day. He wanted us to also do a pediatric enema but apparently our tiny town has no such modern marvel... so we just used a liquid suppository. You can imagine what fun those next couple days were for the nurses and I! The goal is to get 1-2 soft bms each day, which in turn should speed up the stomach's efforts, which should allow us to try bolus gastric feeds again one day. Then maybe later eat primarily by mouth in the usual fashion. I hope this plan works.
Now of course we could not go to Atlanta without returning with a souvenir... for Sam this was a bout of pink eye that went from one eye to the other and then included a stuffy nose that seemed to be draining his energy. He had a brady or two and then by day 5 he was miserable. The pink eye antibiotic drops were obviously not enough. HIs gut was involved and the respiration issues. We went into his Dr. and found out that once again Sammy has a double ear infection... more antibiotics. Luckily after a couple rougher nights he has transitioned to sleeping all the time and no major declining issues. I hope this means that for once the antibiotics are working.
The last bit of excitement to share was what a fright we had last week when Bella and Sofie somehow butted heads while playing and Sofie's nose and mouth erupted with blood and yes, even more fun, she began to vomit. To say it was alot of blood is an understatement. All is fine now and she must have just hit it in such a way as to disrupt an artery near the nose bridge. Such a different feeling to deal with an emergent situation for the girls. I sure am out of practice on that.
I am praying right now for a few families from my church and community. Our neighbor passed away this last week after a battle with bone cancer. I pray for strength for her husband, sons and grandchildren. I also just received news of the loss of a member of my church choir. I know both of these families need to be lifted up. Our lives here on Earth are unfortunately always too short but some people, like these women, have walked a path in life that was meaningful and inspiring to those around them. They will live on in the hearts of all who knew and loved them.