Have you ever felt completely unqualified to be used by God?
If so, you should get ready: because God qualifies the unqualified and
he deems the unlikely, likely. Never think your inadequacies are too
much for Him.
He’s called you, He’s chosen you and He’s
handpicked you. What seems impossible to man is more than possible for
our God. {Luke 18:27}
A dear friend and I were talking on Sunday and she gently smiled as we talked about that special group of people that you see at Children's Healthcare and the Shriner Hospitals. We talked about the children and the way they show strength and courage and show the brightest smiles. We talked about the parents right there with them holding the bags, the balloon, the teddy bear, the machine, the medicine and whatever it takes and still has the ability to smile and tell you its going to be okay. Amazing group of people for sure!! My friend looked at me and said "God knew what he was doing." I shrugged it off, but I think as we do with God we don't feel worthy.
I do believe God has been preparing me for this time throughout my life through many of my struggles and trials. I don't think that God caused them but he can always use them to strengthen me. Taking people out of my life, people turning their backs on me and slamming the door, people causing me pain and hurt all along the way. It has all brought me here and it has made me a stronger no nonsense kind of girl. A kind of girl that I am rather liking. Every time I get knocked down, I always look up and get pulled to my feet and am once again thankful for all of the blessings.
God loves Thomas more than I do. That is an amazing, crazy, wonderful, unattainable thought. Try this, God loves me just as much. That is how much God loves you. Its very difficult to walk into a hospital with your baby because you are not in control and you have to hand your child over to the doctors and nurses. The unknown is always frightening and scary and again there is that loss of control. I have come to realize that I was never in control to begin with. God is always in control and no matter where we are, who we are seeing or what information is given there is a time and a reason for it.
Thomas is doing great!! He is making new strides every day just as any toddler. I am focusing on the positive aspect of him being able to master all that he can at this point and how much he is enjoying his life! Hopefully, he will start speaking better with the speech therapy now in place and then there will be no holding him back. To everyone else, he will look and act like a normal happy little boy!! Unfortunately, I always picture this little black cloud that is looming in the distance that is never really out of sight that signifies the reality of what is going on the inside of Thomas and the unknowns associated with it. Not that I focus or depress myself at the thought, its just the reality of what is. The thing about it also is that not everyone sees the black cloud and that is okay with me. I would rather people be able to see the shining bright star in Thomas and all that he has to offer as an individual in this world.
March is coming right around the corner and with it we are now progressing through physical therapy, occupational therapy and now speech therapy. I will be collecting x-ray copies and the copy of his MRI to take with us to the Shriner Hospital. We have just over a month. I am sure there are other odds and things going on in there, but I am looking forward to my middle child's Birthday, Easter pictures, Easter, and Spring. Then as we round the corner to April, we come ever closer to marking Thomas' 2nd Birthday. Wow!
1 Peter 5:6-7Humble yourselves, therefore,
under the mighty hand of God so that at the proper time he may exalt
you, casting all your anxieties on him, because he cares for you.
Today we officially met our new Occupational Therapist. She was so sweet and had so much fun working with Thomas that is was really nice. She let me talk about my concerns and discuss his progress and she was prepared having talked with our PT before we met and what he is currently working on with her. It so nice when I don't have to start from scratch and explain everything.
So how is he doing? Well, overall he is doing Great!! Both the PT and OT agree that he is doing very well based on his medical challenges. The concern was that he had sensory issues, the testing today proved that he does not have a sensory issue but that all of his 'issues' can be medically explained. He still show weakness in his muscle tone and we need to continue working on that with different exercises including a lot of pushing/pulling objects that are weighted. I love that most of this stuff just looks like playing to him! He also needs to build of strength in his hands. He has a good grasp, but not a lot of strength. He also uses his left hand for strength and his right hand when coordination is necessary. I had never really noticed this before, I mean I have seen it, but I didn't know the reasoning. For example, he colors or eats with his right hand but will pick things up with his left. He doesn't use both of his hands bilaterally either. We have some exercises to work on bilateral usage of his hands. We had to alter some based on his neck limitations as well. She also thinks the fact that his hands are so small that they are more difficult for him to work with and get the type of grasp that he really wants. I have several items to get for him so that we can work on this including the resistance puddy. We are also going to work on attention span and body awareness. I have to read over all of my sheets and get to work. The good news is we only go to her once a month at this point.
The funny story today, in my opinion, was that she was asking if he was small for his age. I said yes and rambled off his height and weight. She began laughing and said that was the same size as her 8 month old. She then made the comment that this is what her baby would look like walking!! I thought it was quite funny myself. I had already compared Thomas to where my other boys were for the size and my oldest was about 8-9 months old and my middle child was 12 months old. For all intents and purposes Thomas is just over two months away from 2 years old and is still wearing 12 month clothes and his shoes are 4.5. But I can honestly say he still can fill a room!!
Thomas doing as all children love to do, playing in Mommy's clothes basket!
1 Thes 5:9 "give thanks in all circumstances, for this is God's will for you in Christ Jesus"
Today I got the phone call from the Shriner's Hospital in Greenville, South Carolina. I was so excited when she called it was hard to think straight. She just told me we had a date in early April and that a packet was coming to me with all of the details. I could call her anytime with questions. They will provide transportation and the whole nine yards, we won't have to pay a dime out of pocket!
This initial appointment the medical team will do their own evaluation of Thomas and then the medical team will decide if they can provide him a treatment care plan and how to proceed from there. This is such a blessing and I am so excited that we got the initial acceptance!! Baby steps!! Once he is in the program they can actually help him until he is 18 years old. Yay!! If you see a Shriner, please thank them for all that they do and if you can donate to them. They do a lot more than just dance around in parades and have parties. They are out walking the streets trying to raise money for their non profit hospitals to help children. If you have ever met a Shriner you know how extremely passionate they are about their mission.
Speaking of donations have you looked at our fund raiser!! Holy Cow!! I am truly speechless at the amount of money it has raised in such a short period of time. I just hope that I can truly express to each and every person how thankful I am for their donation. If I don't say it or the words don't come out right, please know from the bottom of my heart that I appreciate every single dollar that has been donated to pay for Thomas' medical expenses. I pray that the answers will come and that Thomas' medical needs will be support by other means but until that day comes I will still continue to do whatever I deem is necessary to help Thomas' health in the best possible manner. Thank you for allowing me the opportunity to do that at this time.
2 Corinthians 4:16-18 So
we do not lose heart. Though our outer self is wasting away, our inner
self is being renewed day by day. For this light momentary affliction is
preparing for us an eternal weight of glory beyond all comparison, as
we look not to the things that are seen but to the things that are
unseen. For the things that are seen are transient, but the things that
are unseen are eternal.
After my last post, I got a couple of phone calls. Don't feel bad if you were one of the phone calls, it just means you love me and I am grateful for that. My last post was a bit of a downer and yes I was in a depressed state when I wrote it. Am I depressed? Absolutely. Do I have a right to be? Absolutely. Am I ashamed of it? Not at all. This is it, this is who I am. I am only human after all just like each of you reading this. We all have feelings of pain, frustration, anger, love, peace and joy. The past couple of months have been anything but easy for me and for the people in my family.
My life almost has this pivotal point where everything changed, but that would be a lie. It is really a constellation of many things coming against me and hurting me, trying to tear me down over the coarse of my life. However, this is something far more hurtful than what anyone could do to me because it is my child. My precious, sweet, loving, funny Thomas.
Now let's clear something else up. Am I walking around my house moping and dragging my tail. Absolutely not!! Most days I am up at the crack of dawn thankful to not be in the bed anymore and feeding, dressing, cleaning my three boys. Lunch for the hubbs, coffee for me. My oldest has to eat, take his meds and get on the bus on time. My middle child has 50 questions in the first thirty minutes that he is up and in the midst of learning all he can about his world must eat his breakfast get dressed and get ready for preschool. A precious time that is almost over where he is learning how to read for the very first time and will be graduating in the coming months. Then there is Baby Thomas who pages me with a "Ma!" from his crib for me to release him. He runs around with excitement and then begins pointing his demands for 'juice' and 'eat'. Then I must make myself look half decent for the day, drink more coffee, eat a healthy breakfast and be out the door. Give the dog her medicine and breakfast. This all takes place in about one and a half hours in the morning. So, you ask if I have time to feel sorry for myself or my son or the situation? No.
My days only escalate as there are therapy appointments, specialists to follow up with, doctors to call, medical records to get, return phone calls, emails, errands, preschool, lunch, maybe the gym, home in time for nap for Thomas, then the bus, homework, dinner, bath, and bedtime. My priorities are my children in working with my oldest and his self confidence, preschool parties and teaching my toddler new things. In the midst of living, I do have a very active toddler who doesn't look sick or act sick in the least. He is climbing, building, playing just as you would expect any other toddler. You would not know from his regular day that there is a thing wrong with him and everyone in his family acts as so. The older brothers no nothing different and treat him as they would any little brother.
As if that wasn't busy enough, when I am home it is hard for me to sit idle. Instead I am picking up, cleaning up, laundry, dishes and more. I am trying to take care of my health in the midst of this as I have started to experience some anxiety issues. I am trying to eat a healthier diet, drink more water, and have taken up jump roping during nap time each day. I got me a nice pink jump rope and so far its been great!! I have met with my doctor and she has me on some medicine to help me. Its the first time in my life where I succumbed and took anything like this. The hard part is stopping. I have a very difficult time sleeping at night now without assistance. Otherwise, I am laying in the bed with my eyes closed and nothing more. My mind races with thoughts of things I did, need to do, worry about. I have always been a worrisome person by nature but this is whole different level. Getting the mail now gives me anxiety, phone calls, certain doctors, and the list goes on. The finances have become a horrible anxiety issue as the bills come almost daily, the application is on hold until I can get more from the doctors, other avenues I am in a wait pattern. I am having to ask for money, which is humbling and unnerving for me. Sorry, again this is my honest post. The only way I was able to say yes when my friend offered to help was because its not just for me, its for my son and its for my family. I dread having to decided whether or not we should spend money for the boys to play soccer or to take the family to the circus or save it towards the bills. How long is this going to last? What all will we have to sacrifice? My world is not my own. . . . but I know it sounds familiar to other moms with children who came to them differently than their expectations.
So there it is. Its not pretty and it doesn't come with a bow. I have a hard time recognizing my own feelings much less sharing them. Many times my post become more of the information facts than a recollection of what I am going through or our family.
The most amazing truth that has shown itself bright and clear is my Faith in our Lord is unshaken. You never really know how strong something is until it is tested. I will bend but I won't break. My whole life I have had a calling, a need to have God in my life from a very young age. I have never understood it but have never denied it either. I have always ran to God and wanted a deeper relationship and wanted to feel him from my toes to the top of my head. I want his light to shine through me brightly! I am still and always will be working for this. I want to wear his glow! You can have Faith and still worry and be depressed. I think its completely normal and no one understands better than him.
SO there it is. I felt the need to share this with you today, not to make you have sympathy for me or anything like that. But just to be honest and to share real feelings with you. I think in sharing my truths you will feel more like you can relate and maybe find of yourself. We never want to feel alone, especially during dark periods of our life. And most times we don't have to be but we choose to be because we feel a responsibility to not bring others around us down with us or burden them with our problems. I am guilty of both. I am learning that people can love you and lift you up better if you are more transparent.
I pray that today my story touches you in some way. I pray that my blog is not a depressing site full of doom and gloom but a testimony of how to live in the midst of uncertainty. It may not be the way you would do it, but this is all I know. May God touch you and make you feel that tingle all over that makes you smile.
Lift Me Up - The Afters
Lyrics:
You lift me up with Your love
You lift me up with Your love
You lift me up with Your love
You lift me up
Waiting for the sunrise
Waiting for the day
Waiting for a sign that I'm
Where You want me to be
You know my heart is heavy
And the hurt is deep
But when I feel like giving up
You're reminding me
That we all fall down sometimes
When I hit the ground
You lift me up when I am weak
Your arms wrap around me
Your love catches me so I'm letting go
You lift me up when I can't see
You heart's all that I need
Your love carries me so I'm letting go
You lift me up with Your love
You lift me up with Your love
You lift me up with Your love
You lift me up
I know I'm not perfect
I know I make mistakes
I know that I have let You down
But You love me the same
And when I'm surrounded
And when I lose my way
And when I'm crying out and fallen down
You are here to lift me up when I am weak
Your arms wrap around me
Your love catches me so I'm letting go
You lift me up when I can't see
You heart's all that I need
Your love carries me so I'm letting go
I can see the dawn is breaking
I am feeling overtaken
With Your love, with Your love
I don't know what I can offer
In this moment, I surrender
To Your love, to Your love
You lift me up when I am weak
Your arms wrap around me
Your love catches me so I'm letting go
You lift me up when I am weak
Your arms wrap around me
Your love catches me so I'm letting go
You lift me up when I can't see
You heart's all that I need
Your love carries me so I'm letting go
I can see the dawn is breaking
I am feeling overtaken
With Your love, with Your love
You lift me up with Your love
You lift me up with Your love
You lift me up with Your love
You lift me up
Faith and hope are two completely different feelings. Hope is wanting something that may or may not happen. Faith is believing it will happen. Today, we went to the neurosurgeon with hope that he would have something to give us. A treatment, prevention, or dare I say a 'cure'. I was raised to have a back bone, to never stop until I get what I want. If you are strong and persistent, eventually you will be rewarded. Somebody gets sick, you research, find the doctors, the treatments, the clinical trials,. . . . answers. Its the 21st Century its America there has to be something, somebody, somewhere. So, today I had hope.
The thing about hope is it can change. What I had hope for this morning is now different. Today I learned a little more about my Thomas and his situation. Its not all negative necessarily, but its not what I had 'hoped' for. Thomas has unusual bones that cannot be corrected. He has a lot more unusual bones than the average person with this condition. His fusion is extensive and he has unusual bones in all three areas of his spine. However, on the good side his overall curvature and plains in his spine look better than the average person. So, in essence he is really high on one spectrum stating the amount of unusual bones and really low on the spectrum of people with scoliosis, kyphosis, or spina bifida. There is no need for surgery at this time.
Will surgery be necessary in the future? Maybe. What's his 'my Thomas'' prognosis? You cannot fix what wasn't created correctly. He may be fine for a long time or he may have pain within the next couple of years. Ultimately his bones will degenerate and cause him possible pain, tingling, numbness. . . etc. At that point, pain management will be the ultimate goal. Is he at a higher risk. .. . it cannot be determined. In these cases it is individually based as no one has the same bone structure as Thomas and predictions simply cannot be made. The doctor explained how one person with many unusual bones can be fine for years and another person with half of an unusual bone could suffer endlessly from the beginning. My hope got tethered a bit here.
Can we prevent the early degeneration from KFS? No. The bones are fused together. In most instances this is done by humans with bolts and rods, but in this case his bones were made this way in utero. When bones are fused together there are no ligaments in the middle to provide cushion when bones are being used. Therefore, its the bones above and below the fusion that take on the added stress and this causes them to breakdown quicker than the average spine would. This was new information to me. In my mind, the degeneration was just a side effect and we could build up his calcium in order to prevent this from happening. My hope was crushed on this point.
Can we do anything for him now? The doctor thoroughly believes in physical therapy for his neck to build up those muscles around the fusion. He wrote a prescription which I will take back to our PT in hopes that she will have the ability to do what we need. I agree that therapy wouldn't hurt and could definitely benefit him. I am not one to sit idle and wait. I was able to keep some hope on this point.
Thinking back. . . all I wanted to know was what was wrong with my baby so we could face it head on. I wanted to the answers so that we could move forward and work with them and make him better before he realized there was anything wrong. My oldest had ear infections as most infants do and he had tubes put in his ears at 18 months. It fixed the problem and he hasn't had an issues since. Now we can tell him about it and he doesn't recall a thing. But it helped him from being in pain, it prevented any speech delays, etc. Problem found, problem fixed and he knows nothing different. I now know what is wrong with Thomas. I have since learned that its not something to be fixed but something we are going to learn to live with. He will constantly be monitored by doctors and specialists because at any moment things will not get better, but could possibly get worse at any time. Today I learned he could have issues or start back sliding in his development. But the clinic was very sweet and seemed to be there for us when we need them. We go back in six months for a check up and an array of x-rays of his neck in different positions to create a baseline of his neck structure.
Tonight, I am going through this information over and over explaining it to myself. Tonight my hope is that the pain will stay at bay for as long as possible. My hope is that Thomas will be happy and live his life openly, completely despite the pain and challenges that he has. My hope is that I will be able to push through disappointment that my child will have to suffer due to his condition and be able to be a shining light in his life. My hope is that I will be the mom that he needs to enjoy his life.
No mother can
honestly say that its okay for my child to suffer through pain
throughout their life, so instead I will need to allow myself to feel
what I am feeling and then help Thomas to always be accepting and loving
of his own life despite his own pain. Tomorrow will be another day and maybe tomorrow I will begin focusing on my new hope.
My Faith is in my Lord, that he created me and created Thomas and knows things I will never know until his plan is complete. My Faith tells me that my Father God loves me unconditionally and has given me the gift of Grace completely. Grace is not earned, but simply received. He will hold me in his arms and not let me fall no matter how complicated things get or how much I do or do not understand. My Lord will walk with me daily, minute by minute until I am filled completely with peace and comfort. Through all of this I felt as though I was changing, but in reality I am finally becoming the person God has always wanted me to be. Tonight I fall on my knees, praying for these and many others who are weighing heavy on my heart tonight.
Thomas 'cheesing' in his coffee canister.
Phil 4:6-7“Don't
fret or worry. Instead of worrying, pray. Let petitions and praises
shape your worries into prayers, letting God know your concerns. Before
you know it, a sense of God's wholeness, everything coming together for
good, will come and settle you down. It's wonderful what happens when
Christ displaces worry at the center of your life.”
Wow!! I was beaming from ear to ear today while I watched my baby boy throw, climb, pull, tug, ride, push, and run for his physical therapists. We first met her back in November and she was the first to suggest an x-ray of his neck and saw the anomalies that affect him as a whole and not just the small pieces. I didn't like anything she said but loved her just the same for noticing the things I had not and the other specialists had not. Then taking it a step further and showing me what he needs work on and how to do it. We got to work and started doing the necessary exercises with Thomas making most of it look like play.
Today was a great appointment where we both saw all of our months of hard work pay off and it was so rewarding!! We couldn't afford it and I did it anyway! It was hard to make the time for it and I did it anyway!! Its isn't a cure, but at least Thomas can enjoy life a little better now with stronger abilities!! We will keep working at it and keep on keeping on.
Tomorrow the Neurosurgeon!!
Also, we have already hit 16% on our fundraiser to help pay for Thomas' medical expenses!! I feel so blessed to have so many willing and able to help out to benefit our son. Each therapy appointment costs us $45 dollars after insurance so it really puts my mind at ease when I see people willing to help us out financially. I am still going to every resource I know to get financial help for our little man, but in the meantime its wonderful to have the help. Thank you to each of you who have already contributed or are prayerfully considering making a donation. Please share the link to all of your friends and family, ever little bit helps us out a lot!!
God Bless Each and every one of you who take the time to read my blog and pray for our family and our son, Thomas. Tonight know that I am praying for you and your current struggles as well. May your faith find you and bring you comfort.
James 1:2-4“Dear brothers and sisters,when troubles come your way, consider it an opportunity for great joy. For
you know that when your faith is tested, your endurance has a chance to
grow. So let it grow, for when your endurance is fully developed, you
will be perfect and complete, needing nothing."
I am so anxious about Thursday. I am trying not to get my hopes but I am truly hoping the the Neurosurgeon has something, anything he can give, tell me, or direct me in the way of Thomas' long term care plan. I went back tonight to my original resource on how I was even able to find this clinic. I had posed the question to a message board of people who all suffer with KFS. "How do I find a KFS specialists?" This was the response I got:
Allison, if you can find a KFS specialist, we all want her..or him!!
Because KFS is a rare disease, you already lose 90% of the doctors who
"would be" interested. Also, because it involves the spine, the spinal
cord and numerous organ anomalies, what you find is that you need a
team of doctors, and that is a lifelong process unfortunately too ,
because as your son's needs change, the doctors will too.
So
first, you want a neurosurgeon to watch him. The best neurosurgeon (or
neuro-spine) is one who understands spinal cord injury.
I
would recommend an SB clinic if you find out that the lumbar deformity
he has is actually SBO. Then you are in! There are over 200 excellent
SB clinics in the country and I can help you find one that will work for
you. The great thing about a peds SB clinic is that they have a
multi-disciplinary care team, so if you need P.T., urology or other
services, it is there.
Otherwise, I recommend you go with a
physiatrist, but haven't seen many peds physiatrists around. They have
the ability to kind of watch the whole KFS process and refer to
specialists as needed. Once you have ruled out organ
anomalies (heart, lungs, immune system, kidneys and ear are the most
common), then you are good to go. Otherwise, you will need those
specialists at least initially. My recommendation is to get
a hold of those lumbar X-rays and see if SBO is present. If so, then
that is your easiest and best plan for long term care. Even in the
absence of SBO, you might still be able to get into an SB clinic because
they do take spinal cord injured patients in peds clinics. KFS is
somewhere between both conditions.
Let me know if I can help more!
Thankfully, she gave me the right wording to do the search and was able to find the clinic here local in Atlanta. They have KFS listed on their site as a condition that they treat so hopefully they can provide me some more insight into Thomas' case. His level of condition and possibly a prediction of prognosis. I just need one person to look at the whole picture and give me an idea of where we are, what we should be doing, etc. Always learning, always searching and never giving up!!
Tomorrow I will play with my boys and smother them in kisses and Valentine's!! I hope each of you have a wonderful day tomorrow with a sweetie or not. God loves you just as you are right where you are, his Grace is not earned but simply given to you as a gift. We never feel deserving of God's Grace but it is ours for the taking. Remember that God will always fill the places in your heart that no one can at times when you feel alone, he wants you to ask him.
I would also like to ask for special prayers tonight for a dear friend of mine, Ms. Judy. She had extensive surgery today needs healing and comfort. Thank you so much.
Happy Valentine's Day!! Remember always You are loved.
Thomas enjoyed White Chocolate fondue!
1 Peter 5:6-7“So
humble yourselves under the mighty power of God, and at the right time
he will lift you up in honor.Give all your worries and cares to God, for
he cares about you.”
So nice to have a calm week for a change. Thomas is pretty much all healed from surgery. I hand delivered the application with medical records to our Shriner to be processed with the Shriner Hospital. I also spoke with several people on trying to get Thomas' blood drawn for two different people in their vials. That is proving to be harder than anyone seemed. I understand it from a liability stand point, but at the same time I still need it done for a clinical trial in Madison, WI and for his genetic testing.
Did I enjoy this week? Um. . . .Yeah!! I took this week to focus on me a bit more. I have started to work out again, eating healthy and writing it all down, drinking my water. Heck! I even painted my toes and fingers. I know, you can close your mouth now. I spent time just enjoying my boys and baby Thomas. My oldest is so smart and loving that we can have good conversations, my middle son makes me laugh like crazy and Thomas is a busy toddler who still love to snuggle with his mommy LOTS. I have started back at a new Bible Study which is great. I always do better at reading my Bible daily when I have a focus like a Bible Study. So, let's see working on my physical, spiritual and well. . .mental will eventually fall in order somewhere.
A huge source of my stress besides the obvious has been the financial hardship. As you know a dear friend is offering golf rounds with a portion of the proceeds going to Thomas' medical expenses. You can purchase those through here: Tee Times 4 Thomas
Another friend also suggested the site GiveForward in an effort to help raise money as well. Please consider making a donation if you can, any amount would be appreciated. Thomas' Medical Fund
If you know me at all you know that I have a hard time asking for help and I especially don't ask for money. However, God is teaching and working through me on this journey and I realize that the only way to live and to truly be happy on this journey is to learn to lean and rely on those around us who want to lift us up and help us in any way that they can. So, I wanted to provide this opportunity to you to do just that.
As always, the cards in the mail are so sweet and touching, the prayers you send up daily for my son and our family are felt constantly and I cannot thank you enough for your love, prayers and support.
Phil 4:12-14“I
know how to live on almost nothing or with everything. I have learned
the secret of living in every situation, whether it is with a full
stomach or empty, with plenty or little. For I can do everything through Christ,*who gives me strength.” (NLT)
Next Thursday we have our first appointment with Neuro Spine Care for Kids. They already have most of Thomas records from our pediatrician and are familiar with his case. We are meeting with the director himself of the clinic who is also a pediatric neurosurgeon. He is going to review the MRI before our appointment and discuss a care plan. I am excited because the clinic is designed to help treat the whole body affected by the syndrome instead of each individual issue. Its like an umbrella of specialists for certain conditions. The coordinator I spoke with today was so pleasant and informative. We go next Thursday afternoon. I am optimistic about what they may be able to provide to us for Thomas.
Thomas is doing well from surgery. Kids heal so quickly which is why I like getting things done while he is still little if I can. He will never remember going through this unless we share it with him (or he reads mommy's blog, lol). His bruising is almost gone and there is barely anything there.
In two weeks we have our Occupational therapy evaluation as well.
Today, Thomas was very tired and was ready for his nap. I laid him in his bed and he went right to sleep. He slept for quite a long time and I went to go check on him since it was about time to leave for church. I cracked the door to find my precious boy sleeping so hard with one arm over his face and the other arm hanging out of the crib. I just sat there and watched him breath in and out so heavily. I took in the moment just watching my Thomas be still, peaceful and content. He is such a delight in so many ways that is makes me all the more driven to protect his health and give him all the opportunities that I can. The fun part about Thomas is just when you are about to get real serious in thought, he does something to throw you off. He woke up after some stretches, looked up and saw me and smiled. This is what I saw:
I am quite excited! Today the therapists came to the house from Babies Can't Wait to evaluate Thomas. He had a thorough evaluation with Children's Healthcare of Atlanta, but right now we just can't afford to go forward with another therapy with them at the frequency they are suggesting. So, I contacted the director of Babies Can't Wait for our area and we discussed the options.
Thomas tested great!! His scores were really high on their evaluation, which makes me proud that he is doing so well with his gross and fine motor skills. They were also very impressed with his jargon and how deliberate and expressive he is, but at the same time noted there were no words included in the jargon. After their evaluation they asked about the evaluation done by CHOA and I happily shared it with them. Normally they cannot provide services to a child who has good test scores. However, they do have exceptions for children who are showing deficiencies in an area such as speech despite the test scores. The speech therapists was not only concerned that Thomas didn't have as many words in his vocabulary than what he should have but that although he has progressed since the evaluation in December he is not progressing fast enough for his age. He isn't catching up even though there are tons of motivation with me, his brothers, etc. So based on that information they are going to make a clinical case that Thomas would benefit from speech therapy. We have one more meeting to discuss the plan and then therapy can begin.
I am so relieved!! We finally get a service through the state that will benefit my son. Baby steps!
Thomas is healing great from his surgery. You can hardly tell he had anything done. The cuts are healing nicely and most of the bruising has gone down. Thank you again for all of your prayers, love and support.
Still following up on some more items and a couple of more appointments. .. . updates will follow as each is met.
1 Corinthians 2:9“No
one's ever seen or heard anything like this, never so much as imagined
anything quite like it — What God has arranged for those who love him.”
Three surgeries in his 21 months of life, could be much worse and the thing to keep in mind is not all surgeries are bad. No, we don't like having to put all of these harsh drugs in our babies bodies and have them put to sleep in the hopes that all goes well. I will have to say the nurses and doctors at Scottish Rite do everything they can to make sure your baby is well taken care of and does not have any pain.
This morning went very smooth. We got there a bit early and didn't have to register or check in since we had already done that on Tuesday morning. So, we waited a little bit and they came right out and put his id bracelet on him. We got called back and began prep. We were quite excited to see our same nurse, Jennifer, from last time. It was wonderful to have someone who had been with us before and remembered us.
The surgery scheduled before him was having to wait on blood work so we got bumped up. We went into super speed, which was nice but the doctors and all still took their time with us and made sure we all understood the procedure and the risks. He was scheduled for 10am surgery and was taken from me just a little after 9am. Mom and I then ran to grab some breakfast and come back to the room to wait. They said the surgery would be a hour to a hour and half but they would update us thirty minutes in. We ate and waited and then they informed us he was in recovery and brought him to me. He slept for a bit but not enough to really get through the haze of the drugs. He was not happy at all and of course he still had the IV in him which made him very grumpy. Mom and I took turns holding and comforting trying to do anything we could to appease him. It seem to take forever in recovery. It made me smile when the hymn "Leaning on the Everlasting Arms" came to my head while rocking and comforting my baby. The nurse then came and flushed his IV and pumped all the fluid into him and he finally began to come around better. He did seem to be in some pain and we asked about pain management. The doctor had moved on to his next surgery so we had to wait on him to explain the surgery to us and then we could finally go home.
The doctor explained that once he made the incision he could tell where the testicle had been twisted up during development and was only the size of a grain of rice. So, he made the judgement call to remove it and be done. He also made a cut on his penile band as the skin had grown back on. His recovery seems minimal as they did by laparoscopy. He has one incision that they glued it together which we just keep clean and the penis we treat with neosporin for a week at every diaper change. Follow up is in six weeks with the doctor.
Thomas is doing well tonight. He fell asleep on the way home. I moved him to his crib where he slept until about 5:30 this afternoon. He ate some dinner His eyes are still very dialated from all of the medicine but he is walking around and playing with his toys. He did seem be a little uncomfortable and once we got some food in him we could give him some pain medicine. He is not a good baby to give medicine too as he is a great spitter. I got it all in him, he stood up coughed and threw up. My hope is he got enough of it in him for tonight. *sighs* It looks rather bruised tonight, so I am hoping things look better in the morning. He also still has a nasty cough which makes me hurt when he coughs. I am hoping we can get that under control soon, he has been on breathing treatments for over a week already.
I was quite calm and collected today and was able
to be there for my baby in every capacity. I did not sleep well last
night and am extremely tired now. I was able to get in a bit of nap this afternoon but am still worn down tonight. I am so thankful to have this behind us and we can move forward from here. My hope is that we don't have to go through anymore surgeries big or small for a while.
We had lots of people praying for us and sending me
messages on my phone and Facebook all day. Thank you so much to each
and every one of you, they were all appreciated.
2 Corinthians 1:3-5“All
praise to God, the Father of our Lord Jesus Christ. God is our merciful
Father and the source of all comfort. He comforts us in all our
troubles so that we can comfort others. When they are troubled, we will
be able to give them the same comfort God has given us.”
Today we met with Thomas' cardiologists. I wasn't sure what to expect but it was quite thorough and Thomas was not pleased. They did the normal vital signs and then did an EKG. Thomas tolerated it but wasn't thrilled. Immediately I noticed the machine said abnormal rhythm, atrial flutter. But I didn't let it panic me since I was not a doctor although the nurses kept asking why we had been referred. Then we went to another room for heart images. This was miserable. Thomas was not thrilled at all and was screaming and crying through most of it. I held him down and spoke to him softly and sang the best that I could. Then the technician tells me we are half way through. What?!? Okay, let's do this. Finally we made it through and went back to the exam room. Thomas was so worked up but as any toddler it didn't take long for him to calm back down and start getting into the drawers in the room. The doctor came in, he was extremely personable and pleasant. He explained that Thomas has a heart murmur but so does 50% of all people. So, he specifically mentioned the heart anomaly associated with KFS and Thomas was in the clear. YAY!! We go back to him in 2 years for a follow up but sees no indication of any issues.
Surgery is tomorrow, we finally go the time which is 10am. We need to be at the hospital at 8am. I am glad it is early in the morning so hopefully we will be done and in recovery before lunch. We shall see. Thank you again for all the prayers and support!!! I love you!!
A mom can never be too prepared. As a mother of three boys you learn quickly to always have band aids and neosporin within a hands reach at all times. Now when it comes to bigger things happening to your child, we are not prepared and nor can we ever be. Instead you take in the information, you process, you ask questions, you process, you ask more questions and then you begin to do whatever you can for your child. Since Thomas' birth their have been ups and downs, then things got rockier over the past fall of 2011 when a few more things were discovered. It has now been 24 days since we received the confirmation of the dx Klippel Feil for our sweet Thomas. Its still hard to tell sweet people that he is fine, when while he looks fine and definitely acts like a normal active toddler he may not be fine. Then when you talk to doctors or specialists and mention KFS, they almost cringe and lightly tread their words as to where he is and where we are going.
We had physical therapy this morning with our regular PT, love her!! She was so impressed with how far Thomas has come with his strength in such a short period of time. We discussed him possibly moving to the Nuero Spine clinic and she was sad that she wouldn't have Thomas anymore but was thrilled that they would be able to provide him the right therapy for his condition. (We finally got the referral faxed over today, each place has their own hoops). It was great to leave there this morning with rave reviews on my son's progress even with his tempered spats.
Yesterday, we went to Scottish Rite for Thomas' pre-op appointment. It was so nice to be able to register, fill out paperwork and sit down and discuss his case without the edginess and nerves that Friday will bring. I was able to provide her the list of medicines he is currently on, his latest diagnosis with documentation to back it up and phone numbers so she could verify information on how to treat Thomas. She said that I got the Gold Start for the day!. I blushed in embarrassment but was proud too. In case you don't know me that well, I like to be in control and organized. I control the things I can in order to deal with the frustration of the things I can't. So, when I feel like I am loosing control I do something I can. So, I created a binder for Thomas.
This things has come in handy more than one time I can assure you. I have each of his doctors under each of the tabs and behind each tab is any medical records, notes, or test results that I have from that particular doctor. I originally started to construct it when I was requesting medical records for various reasons. Now I take this with me to any appointment and have most of his information at his fingertips. I am missing two doctors at this time, but its not for lack of trying. On an emotional front, I removed any medical papers out of Thomas' baby book and placed them in this binder. It made me feel better to leave his baby book for only sweet memorabilia and cards instead of nasty old medical papers.
SO, Surgery is Friday and I suppose we are as prepared as we can be. Again, surgery is not something you can get use to being prepared for. They know his case, they are going to pull his MRI to look at his spine. They promised me they would take great care of his neck and not extend it. The only outstanding issue is they usually do a spinal block on this type of surgery so that when he wakes up there is no pain. However, they aren't sure given his spine if that is feasible. They will still manage his pain but may need to find an alternate way. Just pray for the best. I am confident he is in good hands and I just wish for the best outcome possible, a quick recovery and allow us to move on from here.
Faith. I have been told I have been demonstrating unmeasurable Faith by a lady at our church who is called things like Saint. I was humbled by her words and always encouraged. Those of you who attend my church probably know who I am referring too as she always greets you with a hug and a smile. So, to have her say such a thing to me was a honor. It felt as though God himself was reminding me that I was doing a good job. Through her words, I was also reminded that God does want us to be proactive and work hard but to always remember that even when things are at their worst he is there. Her class had just left from their Bible study and their focus was Isiah. I have been reading Colossians myself, which was more about what you are suppose to do. So, I can home and this verse jumped at me:
Isaiah 43:2-3“When
you go through deep waters, I will be with you. When you go through
rivers of difficulty, you will not drown. When you walk through the fire
of oppression, you will not be burned up; the flames will not consume
you. For I am the Lord, your God.”
I thought it was too beautiful not to share with you!!
Tomorrow we meet Thomas' cardiologists. I will try to update you tomorrow. I have a good feeling about it, but we shall see what tomorrow holds.
