Halloween 2011

We had a fun Halloween week this year. It was packed with school, church and neighborhood activities! Here are some of the highlights:

Sofia:
Ladybug, Ladybug.. Fly Away Home..

Bella:
Literacy Day and 50's Day gave the children a chance to dress up..

Sammy:
DUCK, DUCK.. GOOSE! This little duckie was content to watch from the sidelines..

Some Create-A-Costume Fun:
Preschool Moms going as shapes gave Halloween an educational angle...

Trunk or Treating
Almost more fun for those handing out treats and decorating their cars..

We hosted a Pre-Trick or Treating Open House for our friends:

And Finally..Our Dorothy, Black Cat and little Duckie hit the streets for some loot..

Abundant Harvest

October has been overflowing with activity. After Sam's appointments in Atlanta, we made it home just in time to attend a little boy's first birthday party. This was Sam's first playdate, actually. It was my friend's son who was turning 1 and everything was done in a rubber duckie theme. It was nice that there were not tons of children at this friends and family party, as Sam was wide-eyed and overwhelmed just watching the kids playing around the room. It was so nice to see him interacting with children closer to his own age. (rare for us as we are so careful about exposing him to illness or stress.)

It was such a fun party! His mom had planned out every tiny duckie detail right down to a live duck encounter on the back porch. Although it was hard for me to digest how much smaller and less developed Sam is than most of these children (and most were at least 6-9 months younger), I realized how much of his behaviors are also the same. He loved watching the duck and could not get enough of the bubbles flying through the air. He was excited about trying out other types of toys. He was incredibly tired after the party, but overall this was an experience I will not forget. It helped break the ice for me to start planning more playdates in the future. He can learn alot from peers his own age and I think he had a really great time.

The next big part to our October month was a high risk appointment for me with the perinatalogist in Pensacola. They do show that there is some fluid in the kidneys and it is considered hydronephrosis but apparently this is the most common abnormality for an ultrasound to show and it usually remedies itself before delivery, especially with boys. They were not overly concerned. There are cases of it being a sign of something more concerning that might require surgery or indicate a larger problem but they have said this does not seem likely in my case. SO.. for now we wait and watch. He is otherwise looking great on the ultrasounds and moving alot.

Not fully knowing the origin of things for Sammy makes it hard to know anything for worrying about this baby. I hope the fluid in the kidneys turns out to be nothing and I know it was made all the more concerning to me just because of what we have experienced with Samuel. The next decision will have to be about whether we feel comfortable delivering here locally, knowing how we feel about the NICU's decision-making on Sam's case. I think it will come down to whether we see other signs or reasons to believe this baby could have a difficult delivery. For now things are going fine.

In the last couple weeks, Sofie had an ear infection and Sam fought some kind of illness all his own... but he got through it. He has had a few more brady events than usual but overall he has done well. We are noticing much more sleeping in a 24 hour period and I am not sure whether to attribute that to the efforts we are making on so many developmental levels or if it is something new. His nurse thinks we need another sleep study as we have been advises many times in the past. They can't do it locally so I guess I have put it off out of inconvenience but apparently one day she was watching his heart rates and sats closer than usual following a few events, when she noticed a trend of oxygen saturation drops and rises in his sleep. The mito Drs wanted us to change our 02 protocol to delivering aid if he is below 95% whereas we had used 91% before. The problem is that he tends to fight the cannula dropping his sats more in the process out of anger so, is it really worthwhile? This is something we need to consider.

I will have to post about Halloween in another post as it is getting rather late, but I do want to share some cute pictures of the kids at the local pumpkin patch choosing out their pumpkins. Sam slept all day in prep for this hour long activity and was left quite exhausted, ruining his Physical Therapy session later that day, but it was so wonderful to watch my kiddos enjoying the beautiful cool fall weather surrounding this abundant harvest of pumpkins. A year ago I would never have believed Sam would have been able to sit and stand amongst all the pumpkins. Thank you, Lord for this day.

This is the day which the LORD hath made; we will rejoice and be glad in it. Psalm 118:24

Another Atlanta Trip

Sam and I made our latest trek to Atlanta for all his specialist appointments and, although it was not without some "moments", overall it was a good trip. We started out very early on a Wednesday morning with plans to make it into Atlanta an hour or two before our first appointment with the mitochondrial specialist. Sam had been a little off the few days prior to the appts and I was a little nervous about the long drive, especially about trying it on my own. We have had problems on drives in the past and have often taken an angel flight, especially when things were more emergent in nature.

I stayed up way too late organizing things for the trip and writing out detailed notes for Jason and my mom on everything to do with the girl's busy schedules. It is funny how much is involved in passing the torch sometimes! I will admit to my "ziplock" obsession.. everything goes in a seperate ziplock and is labeled so there can be no room for confusion..and yet.. there are never enough ziplocks!

So after about 3 hours sleep, we set off around 5 am. I thought things were going well until we got over the fl/ bama line. That is when I heard Sam's breathing get more labored and the moaning sounds from the backseat. I stopped at McDs and he was obviously stressing for some reason, but I could not figure it out so I just repositioned him and got back on the road with some baby einsteins to calm him. Not long after this he had a brady low HR alarm but it was short and his heart rate came back up farely quickly. The rest of the trip there went okay. He had some rough nights not sleeping, arching in what seemed to be GI pain but he got through it and had a relatively uneventful trip home.

While there, his appointments were in many ways.. more optimistic and helpful. The mito specialist had done more genetic testing of blood taken from Jason and I which has again revealed no abnormalities. We talked about how this past 6 months has been the best stretch of Sam's little life with far less major problems. I asked about my fears that we would have recurrance of the severe issues with the onset of fall flu/ cold season. They do believe this time of year may pose risks for Sammy and we will need to be overly cautious but they want us to take advantage of opportunities to expand his development.. keeping in mind his limits. They have watched for signs of autism and are not seeing that in his picture in any way.. yay! He is very social and engaged in his surroundings. He is quite age appropriate in many behavioral areas. He does show some sensory behaviors when calming himself to sleep with swinging his head back and forth. He still does this movement of his arms and feet to show happiness and communicate feelings. He is very bright and understands far more than he can communicate. We talked about how much he is doing now since gaining weight and staying well. He is cruising and vocalizing and bouncing to music. He is eating many new foods orally and although he sleeps like 15 or 16 hours a day, he is very happy to play with toys and explore his world when he is up and about.

He had a Resting Metabolic Rate test done as well. The first time he had this done, he was a 9 month old and slept through it entirely. They place a large egg shaped dome over your child and run oxygen into it while they measure your carbon dioxide output etc.. as you breathe restfully. This apparently helps them to get a measurement on your caloric spending while at rest. Sam had failed it before, but I was hoping he would do better now that we are experiencing seemingly better wellness lately. I don't have results back yet, but I wonder what all they could even study since he was like a completely different child on this occasion. He was angry and put out by this test. He hated the dome and as it was warm inside and Sam decompensates in heat, I watched him morph into his crash behavior. The tech and I tried reading to him and singing but he was not willing to cooperate. I never saw such relief as his face when she lifted that thing off his body. They said they did obtain enough material for long enough so at least that is done.

The Nutrition and GI appts went better that this. They were pleased with his progress and actually decided to drop back on our GJ feeds by about an ounce per day. We will be watching how he handles this small change with routine weight checks. This change will allow Sam to go 8 hours off the GJ pump which is huge for us since that means he can be more unencumbered by the tubes. With all the cruising and crawling he is trying now, I wanted him to have more flexibility of movement. They are not counting his oral feeds in the caloric figures which are over 1000 calories a day right now.. quite a lot for a kiddo his age. He just needs more.. I guess, than most. They will not clear us to try bolus feedings again through the G tube (direct to stomach in faster amounts) even though they know some food and all his meds are going into the stomach. They don't want to rush things and land back where we were when we had to switch over to the GJ. I want to believe he could normally handle it when well.. and just not during periods of illness, but they think it could pull energy from other areas.

They were a little concerned about the difference between his strides at gaining weight versus the length. He is just barely on the growth charts for weight but still a far ways off for height. He is considered 85th% for personal weight versus personal height..I always thought the higher percentiles were good.. you know how it is when you hear other moms bragging to eachother about their child being 100th percentile for height and weight.. but I guess that is when comparing with the peers on each level, not on your own ration of height against weight. Basically.. they don't want to make a very short, fat baby. This would make his PT strides that much harder not to mention the stress on pulmonary/ respiratory systems and risks of diabetes etc. So they will be watching him closely. He looks great to me.. proportional even.. just much smaller than his peers. Surely he can't continue to gain at this rate without some additional length. What a nice feeling it is to look at your baby's body and feel pride that the looks of FTT are no where in sight. FTT = failure to thrive, for those readers that are unfamiliar with the ugliest words to ever be labeled on your baby. Well, he is thriving farely well now.

So overall the trip went well. We were blessed by the opportunity to stay at the RMH again and met some wonderful people there. It can be hard to meet people there as well since many are going through the roughest days and you can recognize in their eyes feelings you have shared. One family we met have a daughter who was there for her muscle biopsy and consultation with our same mitochondrial disease specialist. They were also from Florida and had been through over 11 neurologists in a 10 year search for answers. Their daughter's trials were more gradual in nature and it seems like the last year or so have had the most devestating toll on her life as they saw her dramatically decline in motor ability. She is now ataxic and unable to walk or move from her chair. She no longer speaks but apparently has cognitively remained unchanged. I am praying for them as I saw that they just want to know answers and I know from our experience that the answers are not always within our reach. Only God has all of them. It is painful to watch a mother explain her years of agonizing worry and concern. I hope they find some peace and that their daughter not experience suffering and pain.

I also met the family of a child severely injured in an ATV accident. She had already undergone several brain surgeries and the reconnection of her arm to her body among other serious issues including losing an eye. The family was busy unpacking boxes of get-well gifts sent by her 4th grade class and it was hard for me to comprehend how her life would forever be changed by this accident. I have met victims of this same type of avoidable tragedy each and every time I have stayed at the RMH in Atlanta. It seems unreal to imagine the immense loss that has taken place in the lives of these families over this popular outdoor hobby and the guilt they probably feel about whether it was safe to ride these vehicles for sport at that age. I could not help but wonder why children are allowed to take part in such dangerous activities..and I am ashamed to say, that I found myself judging the parents... which leads to why I am writing about this family.

Although I was praying each night for this sweet little girl whose dreams, opportunities and maybe even her life, could be cut short over what?? a thrill ride?..I began to realize that I needed to pray for these parents. They hardly needed to be judged over whether they made wise decisions for their child's choice of play toy. They needed my support and understanding and prayer. I am disappointed in myself that it took such a period of reflection for me to realize this. I hope God will lift any pain or guilt they were feeling about what happened and help them through a torturous time.. through all the surgeries and therapy, through endless waiting and the unknowns about the future. I do ask God to help all of us parents make more careful decisions about our children.. but more importantly, I ask that we be more willing to reach out and find common ground even when things seem so hard to understand. I have a long way to go in my walk on that particular road. I realize how many mistakes we all make in life but in the end, God is more concerned with how we move away from them, taking stock and changing for the better.

Coming home from these trips always leaves me thinking hard about what most families consider hardship... you never entertain these situations in your mind until it is happening to you directly. It is humbling to see the face of real hardship and then come home and be able to count your own blessings. Of course God made this world such that no one person's experiences match another and I am not sure I would want to live in one where they did, but I hope when I see the hardships of others I gain more perspective and realize how blessed I really am in this life. I have three wonderful children who are learning and growing, albeit with their individual differences. I have overcome hardship and become stronger for it but I make mistakes everyday. I have friends and family to love. I have shelter and food and I have my faith. Even in hard times, it could always be worse and at least we are never alone.

Prayers ..

Over the last 6 months, Samuel and our family have been blessed with the care and nurturing of several very loving nurses. One of our day nurses had to take time off last month after her husband deployed and but we have stayed in touch. She became like family to us and we miss her terribly. I just found out that this week she and her family have experienced a tremendous traumatic pain and loss. While visiting here, her sweet 22 year old sister suffered a massive brain hemmorage and stroke, was sent home from 2 local ERs when they could not detect the answers for why she had a major seizure and required CPR. She left on medication but continued to experience neurological symptoms and go into serious decline leading to her current state in a coma on life support at yet a 3rd hospital with no expectation that she will recover. I am sick with worry for this family. They are on my mind and in my prayers.. More than prayer I feel paralyzed on how to help from here as they are now in a hospital ICU several states away. I can only hope they will bring our nurse's husband home from deployment so she is not so alone right now. Please hold her up and her family with your prayers. I am praying for peace and strength as they process some very serious medical decisions. It is so impossible to understand such a horrible end to a beautiful young girl's life. God holds those answers and I know he has a plan for helping this family with coping through this horrible tragedy.

This is how much I love all of us..

This post started out about the highlights of our week and specifically updates on my recent OB appt (More on that info in a later post). After a busy week with the kids away, I was thankful for the time to do some house projects and share quiet periods alone with Sam. Once the girls returned I was eager to soak up some alone time with each of the them. This is how I came to have an enlightening conversation with Sofia over a picnic on our front porch that left me reeling at how little credit I give her for understanding the deeper dynamics of life. She shared her thoughts on the new baby and on Sammy's special needs and all about how she wants to be the kind of sister I would want her to be to her siblings.. and that she felt very loved. This is the point when my heart swelled and I felt so thankful that God entrusted me with these sweet children.

A week earlier Sofie did a water color painting after school for me and proclaimed that the art was showing how much she loved all of us (meaning our family). During the picnic she was quite candid about all of these feelings. As I watched her chatting away about how her baby doll (who along with Sammy had joined us for the picnic) was learning to eat by mouth the way her brother was doing with the help of his therapy, I felt this overwhelming feeling of peace and thanks that she absorbed things in a healthy way and was not acting out or feeling insecure. I felt so grateful that amidst all the pain and worry and stress of Sammy's condition, not to mention experiences relating to my mom's traumatic health/post cancer journey, we have been so blessed overall to experience a calm period of late. A reprieve. A gift of peace.

It was at this moment when that original blog post got hijacked. I had decided to check in on the blogs of some of the families I follow, some of which are also effected by this horrible disease. It has been a double edged sword making connections online with other families. On the one hand, these remarkable families inspire me to stay hopeful, hang on to my faith in hard times and to realize we are not alone in this journey. They have helped me find humor in some of the absurdities..and with some I feel this incredible link purely because the path we are trying to navigate has already passed under their feet. I can't put into words the magnitude of hearing someone else's view on a particular test or Dr. and then finding it fits your own perception to a T. We share something and yet it is something you would never want to share with anyone.

It is like when I read about a husband and wife who laid in bed one night talking and finally saying the words that had run through their individual minds silently a hundred million times.. that their child's life might be cut short.. that it might be a reality they need to face together. Those moments are something only certain people could read and fully understand. It is in reading those shared thoughts that I feel less alone in all of this. But it is also incredibly hard to find you are praying and feeling for so many sweet families, even though you have never met them in person. Sometimes it feels unbareable to take in all the highs and lows. Each time you check on them there can be wonderful progress or joys from happy experiences or really horrible things going on with their health battle. It makes your own worries about your own child that much more raw.. It is so painful to think about someone's sweet child (maybe some 800 miles away) fighting for their little life. You can find yourself reliving those times you were in their place or you imagine you could just as easily be in their place tomorrow. I have come to know some of these kids and because I relate from similar circumstances, it all hits me so hard. I think about how before Sam arrived on the scene, my image of a suffering child was probably that of a child from a third world country or most likely fighting cancer. But now I know all too well that cancer is far from the only threat to innocent children.

So tonight when I found very concerning updates on little Talon, a baby boy Sam's same age fighting Mito, I stopped my earlier post and took time to pray for this precious fighter and his family. Talon had only recently had his G tube placed and had just gotten over a tough period following an illness. His mom's last post had sounded so good, happy to be home.. and now things are so uncertain and scarey for them. I found myself in tears as I read that he has been in the ICU since Wednesday and is status elipticus (constant seizures) and intubated. Only last week I had a talk with our Dr about how we don't have any emergency suppository meds on hand at home for a longer seizure that could lead to status elipticus. I think our current neurologist fears how that med would interact with his other weaknesses..respiratory etc. We have had so few seizures but what he has had have at times lasted as long as 7 minutes and clusters of up to 45 minutes. It is my worst fear that we not be able to stop one and it take too long for help to arrive. With his other issues, when his heart rate has plummeted and he has stopped breathing and turned cold grey, there was little time to worry about 911.. we had to act immediately and rescue him. I can't imagine watching seizures at a bedside and not be able to stop them or do anything to rescue my baby.

I hurt soo much for this family and all the others we have met. I hate this horrible disease. It is so unfair. It is attacking innocent children and yet.. noone outside our world even knows what it is. We don't even have all the answers on Sam to know if this disease was always going to be in him or if it is a secondary disease process..or what.. too many questions and not enough answers or solutions. I know all too well how powerless this mother feels right now.

I went in to Sam's room and watched him as he slept. I cried and prayed for Talon. Sam was sleeping more peacefully.. more peacefully than the junky breathing he had last night. His ear had blood on it today and I worried about a burst ear drum but I am hopeful it is just a scratched area, however I hope that would not mean he was pulling at it which could point towards yet another ear infection to make things miserable. He has had quite a few recent rounds of antibiotics again and although we have been luckily avoiding a major crash where his gut shuts down and respiratory tanks and we end up in the hospital, I am always aware of how fast those scenerios take place. I worry about every possible taxing issue or illness. So when today was not our best day, I began to worry.. but now I look at Sam and he has been at his strongest over the last few months. I need to give God my worries and just know we are blessed for the good days.

This family just wants to blink and get back to those good days. I pray for that for them. Peace and calm over Talon's sweet body. I pray healing and strength for all suffering children. I pray that their pain and illnesses not be in vain. Lord, please reach people with their strength. Help people to be more thankful of each day and the gifts you give them. Help them to let go of petty concerns. Help them through adversity and guide them to choose to help others. Tonight I am thankful for picnics with my children on beautiful, sunny days. For daughters that are emotionally wise beyond their years. For Samuel's ease of breathing right now. For sweet birthday parties like the ones we attended today.. that remind us how precious it is that we can mark each year and watch our children grow.