Friday, December 2, 2011

Thanks in the month of November..

I am thankful for all our blessings.. for each new day.. for each lesson learned.. for every challenge and opportunity.. for my family and friends.. for those who helped us through the hard times and those who enriched our lives with good times. I guess most of all I give thanks for the things that have mattered and the discovery of the things that don't. For all of this and so much more, our cup overflows and we were filled with thanks during the Thanksgiving holiday and will continue to be every day.

Recap on the rest of November..

Before leaving for the Alabama trip when my Papaw had a stroke, Samuel had come down with his umpteenth double ear, eye and sinus infection for the year. He started a 10 day run of cefdinir antibiotics and when I returned seemed to be doing better. He slept a ton.. which is already way more than most kids do on his good days but when sick seems absolutely non-stop. Over that week, we had our previous general contractor back in the house to finish some issues from 2 years ago and to make some additional adjustments to the house. It was a little chaotic and the weekend was already looking somewhat overscheduled with activities, so maybe I should have known Sammy would end up feeling the effects of all this activity. Well.. we ended up taking a major downslide after the busy weekend.

This picture above was taken of Sammy after learning to stack these triangle shaped crayons. He was so pleased at himself that he made a sound eerily similar to "I did it!" He now says this same line from time to time when he does something right, much like how he has long enjoyed clapping for himself. Seeing as his only other real words right now are "dad-dy", "mamaamama" and Dad-du (for thank you), I was pretty excited. He is also now whistling and can immitate repetitive sounds that we make for him. Jason comes up with a sequence of sounds and Sam whistles or hums them back in perfect order.. He is actually very musical and seems to have a good "ear" if you know what I mean. He just does not speak out yet as much as we would like. I want to expand his use of sign language.. he understands far more than he performs but at least now he tells us when he wants more food and more play etc...

Busy Weekend

The Saturday after I returned from Alabama included a final soccer game and party for Isabella as well as a birthday party for Sofie to attend. Additionally, Samuel was invited to go watch the local Grace Rides Family Day at a local camp ground where children with special needs would be riding therapy horses, showing their families and friends all they had learned this year. So, to make all this happen at once, we split up some parts in order to conquer everything. Samuel was very quiet in the stroller but seemed happy to be getting out of the house.

Soccer games have been a great outing for our family this fall and I will miss those mornings, even with the hubub of coordinating uniforms and snacks as well as packing up all of Sam's "gear". I love watching the girls be active outdoors in the fresh air and I think Sam gets alot out of the experience as well.

Sofie had a great first season, showing us what we long have suspected that she is quite the athletic child, but we were also excited to see Bella take more interest in the sport this year. Of course I had to laugh when a friend of ours captured Bella running with pure joy and abandon during the last game as she clutched a palm full of wild flowers in her hand.. that's our Bella.. practically prancing along the field!

Samuel had the opportunity to make some new friends at the therapy riding event we attended that afternoon. The little girl on the horse in the picture below is 2 and had suffered a stroke before birth leaving her with many physical challenges. Although she and Sam share a therapist and we actually have mutual friends with her family, we had never met in person before. I remember talking to her mother early on in Sam's life about my G tube questions, and my frustrations that Samuel was missing so many milestones. She seemed so much more experienced with navigating the rough waters of having a medically complex child. It has helped me to know there are other moms experiencing this and coping well.

As I watched this beautiful little girl show her strength atop this horse, using concentrated skill at placing hoops on the pipe in front of her, I thought about how many parents take it for granted that their child will sit up on their own or eat orally or do something like riding a horse. To see this sweet child accomplish her ride and the task of placing the hoops on the pipe, all the while whipping her neck to the side to smile over at her mother was quite an amazing sight.. it sent chill bumps up and down my arms. I was near to tears to see what a positive effect this program has on the participants. I think we had been invited to come see the performance as Samuel may be a candidate one day for this program after turning 2. He is soo small right now though that I can't even envision when I could feel ready for him to take such a big step. He really is about the size of a 9 month old and will be 2 in the spring so it may be awhile for him.

It is so wonderful though to know our area has resources available like this one. Every child that we met was obviously facing completely unique personal challenges but the one thing that they all seemed to share was their determination and I think that is something that we could all stand to learn from watching them. I know I personally feel ashamed at myself when I watch Samuel struggling to stack an object or get a spoon up to his mouth. Nothing comes too easily for him.. but he always keeps at it.

Bath time has become a new area of acheivement. Sam has a special bath chair that he can lay on but in recent weeks, he has been able to hold his core with more strength to stabilize himself while sitting in the bath. Of course we are always ready to grab him if he loses his balance. He really loves this daily bath time, I just wish activities like this were not so taxing for him. It matters not whether his bath follows other activities or is taken right after waking from a nap.. he is always ready to go back down once the bath fun is over. This is much like the PT and DT therapy sessions. He may be able to cruise now but give him 30 minutes of cruising and crawling and you will find him laying down and rolling to his back, ready for a nap. This is a constant reminder that his batterys don't stay charged for very long periods.

Following the busy Saturday of activities, my mom came to stay so I could get her off to the airport at 4 am for her trip to Belgium. That, in of itself was a stressy experience as I worried over all her gate changes and the long day traveling. Luckily, she made it there safely. Since then I have gotten reports of what a great time she is having so I am really happy she made the decision to go.

It was the next day that I noticed Sam sliding a bit in his endurance and overall health. By Tuesday evening, he had taken a full downward slide in his breathing and overall wellness. He was retracting and using accessory muscles to breathe. There had already been a bit of noisy breathing but it was Tuesday night when, of course we had the rare instance of no nursing care, that things took a major turn for the worst with respiratory distress and GI pain. The usual nurse had gone away to see family for the holidays so we were up all night with Sam. He was miserable and fighting every attempt we made to make him more comfortable. He was dropping his O2 saturation levels but would fight the placement of the oxygen cannula in his nose. He was writhing against his GJ tube feeding so we eventually stopped the pump and stuck with pedialyte through his G tube. He was running fever which is unusual for him since even if he feels raging hot to the touch, sometimes the actual reading will come back sub. He is odd that way. The next morning we headed in to see the pediatrician and she could not figure out the main source of his symptoms but started a new round of augmentin antibiotics for another 10 days.

I posted a few videos on our youtube channel of Sammy not feeling so great..these were actually when things were improving and he finally was so tired out that he drifted into sleep. The rough night was far harder to watch. I just hate that paralyzed feeling as a be unable to fix it and just make it all better.

I left the pediatrician's office confused about what they thought had really been the source of this newest setback since apparently the ears and eyes don't seem near as bad as before... what were the antibiotics meant to treat specifically..or do we answer every illness with yet another round of antibiotics and hope it works? I was just thankful that he finally laid down and fell asleep more restfully, albeit labored. He spent the next 3 days sleeping constantly but at least perked up a bit for Thanksgiving day to have a few smiles and some happier, less junky sounding moments visiting with our family.

Thanksgiving was more laid back than usual. We had Jason's parents for dinner, as well as, his sister, her son and Jason's grandpa. The kids enjoyed playing in the backyard and I spent most of the morning cooking, thankful that the nurse was available to watch over Sammy. I could not help recalling this time last year, when amidst the hubbub of planning the meal, Sam had a big brady and later a seizure as well. There is nothing quite like the peace of mind of having someone else there for him on crazy busy days like these so we know his needs and routine won't be disrupted.

After sleeping much of the day, Sammy went on to sleep from 9pm to 12 noon the next day too.. obviously he needed some zzzs. Since then he seems to be getting over whatever attacked him but has had some sporadic unexplained pain moments and junkiness with his breathing.

Over the last few days of this month I discovered our dryer was not drying as it has a bad heating element.. it is only 2 years old but of course I was given the "they don't make em to last these days.." speech and so I guess I just have to suck it up and get it fixed. After just having to replace the pool pump for over $1000 and the whole AC/ heat system this summer for $6000.. I am officially DONE with stuff breaking .. maybe 2012 will be a repair free homeowners year for us having replaced every thing that could possibly fall apart. IS there a replacement available for me though if I fall apart.. that is the question of the hour! HA! I must say I did enjoy a little girl time at the end of this month with my good friend Jenni, who was visiting for the holiday weekend. Nothing can refresh you and get you back in the right attitude like some good old fashioned gal time!

I am happy that I somehow managed to squeeze in the Christmas decorating right after Thanksgiving in hopes that now for December we can just sit back a bit and enjoy the down time. The girls are into some new activities like learning to roller skate and joining a church cheer squad so I am sure we will not be too bored.

As for me and the pregnancy.. (and I guess I will have to find time to snap some belly pictures to show here) I am HUGE. 32 weeks and I still feel pretty good but very tired.. I guess it feels quite different to be pregnant for the 4th time at 32, than how it felt for the 1st time at 25. I had to go do the 1 hour pregnancy glucose testing this month and it was about 2 points over the limit so I then had to go to the hospital for the 3 hour glucose testing which came back fine..I passed. I figured I would as usual but it is such an inconvenience and I HATE the yucky drink stuff. ICK.. I have a high risk appt on Monday in Pensacola right before Sam's cardio appt and scheduled echo. I am praying for no issues or concerns for any of us that day. I really think the hydronephrotic kidneys that they had seen will turn out to be nothing as they have told me but in light of Samuel's scary final trimester and birth, I want to be proactive. The only other thing I am praying about is those pesky blood pressure concerns. I have had a tendancy towards preeclampsia in 2 of the last 3 pregnancies and when I went in the week before last it was elevated on their first take. They asked me to relax (which struck me funny since I was waaay more relaxed than usual) and then retook it after a short period and it was a little lower but since then I have had some "moments" at home (a few floaties in the vision and elevated BP) as well so I am trying to manage my stress and stay calm as a cucumber. Of course I have read that none of that really matters if your placenta is prone to preeclamptic problems as it is already out of your hands completely..I read somewhere that the biological changes of the placenta are ingrained from the getgo and not brought on really by anything you could be doing stress-wise... so praying not to have any of those issues this time...I just want to welcome a healthy baby boy.. 10 fingers and 10 toes and a life free from too much struggle. Is that too much to ask? It seems God also has that one in his hands so I will trust him on this. I am also placing other prayers in his hands..prayers for friends with children who are ill and in the hospital, prayers for my grandfather and grandmother as well, prayers for deployed husbands and families apart for the holidays.


  1. Thanks for the update, Amanda. You're very thorough and have such a way with words. Since we haven't had a lot of time to chat lately, I'm happy to read of the Negron adventures. For better or worse, you always persevere! xoxo Vanessa

  2. Love you guys and thinking of you. If anyone can handle this with grace, its you.