Good Bye and Hello!

Today marked the last day of our physical therapy, yesterday was the last day of speech therapy, and Friday is the end of special therapy. He will be moving on to a new program in January since he is turning 3 this week. I thought that I would be glad for therapy to come to an end. It will be an end to driving to Marshville back and forth and quick cleaning my house before the therapist gets here and I thoroughly embarrass my self. But it has been incredibly sad. These therapists have blessed us so much by their love for Sam and dedication to see him improve. This program has been such a huge help for us when we were so unsure of how to help Sam. I cannot thank them enough. I felt so silly trying to find them gift cards in small amounts. How can you repay someone who loves your child and cheers them on to new levels? Today, as we were leaving his therapy session, I just started to cry having to leave them. Don't worry, they all have seen me cry many times. I guess that is another reason why it is hard. They know and understand the difficulties Sam has faced and the ones he will face. They have heard my worries and my hopes for Sam. Thank you God for bringing each of them into our lives! My mission is to get the word out about this wonderful program so that it can help other families as much as it has helped us.

Sam has finished up all evaluations and has been placed in a class starting in January. He will be going to "school" Monday through Friday and will be receiving his therapy there. He will be eating breakfast and lunch there. I was able to go and visit last week and was very impressed. This is a tough decision to make but we feel that this is the best for our Sam. I have heard so many great things about this program and wonderful testimonies on how much it has helped different children. So, we are going to give it a try. But we are sure that Sam will love this especially since the room is like a huge playroom with an art center, a music center, cars, and balls,etc... The teachers were very nice and seemed to love what they do. But. it's still going to be incredibly hard to send him.

A Busy Week

The past few weeks have been so busy with appointments. We have practically lived in our car. Tomorrow, we will see the airway specialist who will review Sam's x-rays. Then, we will be visiting the school that Sam will be attending in January. I can't believe that my little Sam will be going to school. This breaks my heart and was such a hard decision to make. I feel like we are trading in his early years at home with me for therapy. I met with 6 therapists last week at the school so that they could evaluate him. I was filling out papers and they were discussing and analyzing Sam's every move. It was a little overwhelming but they did do everything that they could to make me comfortable. They were all very nice. I did voice my concerns and hesitations in committing Sam to this program but they did explain something to me that I had not thought about before. That yes, Sam will be receiving lots of intense therapy now, but the goal is for Sam to not have to receive any by the time he reaches school age when he will notice that he is different. On Thursday, we will be meeting again to hear their recommendations for what kind of services they feel will best help Sam. Please continue to pray for his development. His speech needs so much work and we have yet to figure out why he cannot yet speak very well. I know that Sam has such a great future and God's hand is on him.

Lastly, I wanted to ask you to pray for this family. I have been reading her blog for quite a while now and am always so blessed and encouraged by what she writes. I do not know her but just came upon her blog when doing a search on symptoms that Sam was having. Sam's problems do not even compare to what they have been through with their son. Her son's name is Noah and he needs your prayers. They have been through so much and his health is not good. Yet, they continue to praise our Lord. They do not have a diagnosis yet for their son but he is in the hospital and not doing too well. I promise that you will be blessed if you are able to read her blog. I think that they have 7 kids with one on the way. It's funny how we come across certain people that the Lord writes on our heart and this is a child that I have on mine. Please pray for Noah's healing!

Sam the Man

Updates

Well, we have seen so many specialists in the past few weeks. However, not much has changed. They all feel that there is something wrong with Sam with his breathing and lack of growth. We have seen an allergy specialist, the ear specialist, the breathing specialist as well as the pediatrician. One doctor recommended that Sam get an x-ray of his adenoids done. He felt that it may be the cause for his increasingly heavy breathing. We did that today and will probably know something tomorrow. As far as his therapy goes, Sam is making some strides with his physical therapy. He is trying his best to keep up with Elijah. It is really hard to see Eli do so many things so naturally while Sam struggles to do them very unnaturally. He is not making much improvement with his speech lately. Jeff and I are considering putting him in more therapy. It will be very expensive but well worth it, I am sure. Tomorrow, I will be visiting the school that Sam will be going to in January. Please pray for us. The thought of Sam going to school just scares me being that he is only three. He just seems so little. I do have a friend who's son has some similar problems as Sam. She said that the school has helped her son out so much. I hope so. He will then be evaluated to see how much therapy he will need as well as how many days he will need to go. My prayers are that Sam will be able to be caught up by the time he reaches school age. We definitely have our work cut out for us.

Yea!

Just a quick update... Yesterday, Sam had the best physical therapy session he has ever had. He climbed on all of the equipment, walked on the treadmill, and climbed up the stairs, all without crying. I'd like to take this moment to thank... I'm just kidding. But we do get excited about these little steps. Thank you God!

The Appointments

Last week ,we met with the plastic surgeon, the general surgeon, and the eye doctor. The plastic surgeon is requesting that Sam have a food allergy test run. He felt that Sam was breathing a little too hard and that combined with little growth can be a sign for a food allergy. We have suggested this before but with no luck. So, we are talking with our insurance company to see if this will be covered. Also, he said that we will wait a little longer on the palate surgery to decide if the palate is what is causing his speech problems. He also asked that we get his hearing re-evaluated. The eye doctor said that his eyes were doing much better. He will still need to wear his glasses but there is a lot of hope that he will grow out of his eye problems. We lost his glasses last week at the fair the night before his eye appointment. I asked all of our family to pray that we find them because they are so expensive. Well, we found them but they were so trampled that they were almost unrecognizable. Thankfully, we had insurance on them and we ordered new lenses. Lastly, the general surgeon thought that his stomach still looked a little too red and would like to see him again this week.

All of Sam's appointments seem to run in cycles. He has quite a few more this next week and then we will be slowing down a little bit. Thank you all for your prayers

Tough Guy

Today, we meet with the plastic surgeon. We will be planning when the next surgery will be. I'll keep everyone updated.
I put this picture on here because Sam is always falling down, but he hardly ever cries. Most of the time, he's still smiling, just like in the picture.

Post-Op

Sam is doing so well! He is the toughest kid I know. He is on some pain medication but has had only one dose today. When it starts hurting him, he will point to his tummy and say OW! He never cries about it. He even loves to show off his little bullet wound (that's what it looks like!). I think that he just loves the attention when he lifts up his shirt and everyone says, Oh, Poor thing! He is so cute. He gets the biggest grin when he gets any sympathy. We have an awesome small group that has brought us meals every day since Thursday. We are so thankful for the friends that God has put in our lives that lift Sam up in prayer, even though I feel a little bad accepting these because he is doing so good. Thank you all for your prayers. God is so good! Oh, and this was also the best Sam has ever done coming out of anesthesia.

Surgery Update

Sam's surgery will be this Thursday. The Doctor will be repairing the sight where his feeding tube used to be. Thank you all for your prayers. It always comforts us to know that there are people all over lifting him up in prayer. We feel those prayers and are continually strenghtened and blessed through them. God bless you all!

Uncle Tim and Aunt Katie

Sam's Progress

It has been a long time. We have gotten results back from Sam's genetic test. Since we are unsure of what the diagnosis means, I would rather not write it out. But, I will say that they did find an abnormality but it is so new that they are unsure what symptoms it will cause. So we are determining how much more testing we would like our family to undergo or if this is enough. We are leaning towards the latter. As far as his growth, Sam went to the endocrinologist today and he has gained.....2 and a half pounds. Yea! He has grown 1 centimeter. Yep...1 centimeter, but we'll take it. The doctor assured us that this is good that he's gaining before growing. That way, he will not end up looking like he's been in some sort of war camp.
As far as surgery goes, Sam will be having a small procedure done on his stomach where his feeding tube once was. It has begun to leak every time he drinks anything. We will be meeting with the surgeon on Thursday to plan the surgery and will know the date then. The thought of having another surgery is kind of scary. Sam does not react well to anesthesia. The older he gets, I think it will be harder to have these surgeries because he is well aware of the fact that the doctor's office visits and hospitals are generally a scary thing.
He is doing a great job with his walking. He runs now and loves it! He loves to chase his brothers around the house and is pretty fast. We are so proud of him!

Our Hope

Well, we saw the geneticist on Thursday. It went pretty much how I expected it to go. He, along with a genetic counselor and 2 interns, measured and examined Sam . Sam must have piqued their curiosity. It kind of reminded me of the movie ET when he is captured by the scientists. It is pretty terrible for your child to be examined like this. I know that they are just doing their job, but I sometimes wonder if they realize how hard it is on the parents to discuss the abnormalities of their child. I guess that if God is not allowed to be in the discussion, it does make for a gloomy outlook. But don' t they know that we serve an awesome God and no prognosis is set in stone? He is our Hope and He is Sam's creator. Sam was not a slip up and He created Sam perfectly how He wanted Him to be. I have to hold on to these truths and cling to the promise that God will heal him one day, I just wish that they could comfort the parents rather than be so matter of fact. Yes, give it to me straight up, but don't forget to remind us that our children are not a mistake and that God has a wonderful plan for their lives. As you can tell, this gets me a little fired up. He told us that some of Sam's features are not like mine or Jeff's. You would think that that would be a good thing. He also thought that Sam has some type of syndrome or chromosomal abnormality. There is a new chromosome test that has been developed since Sam was born. So, they took his blood, successfully I might add, and we will know in 2-3 weeks. He seemed pretty sure that we would find something that would explain Sam's health and developmental issues. Please pray for us as we await these results. Pray that God would calm our anxious hearts.

Sam is in His Hands

Sam is continuing to have his growth hormone shots. He started off with quite a bang, but now is hardly eating anything. I will be calling his doctor in the morning as I think he is losing weight. This is so weird for Sam because he is such a good eater. I was not told that this could be an effect of the hormone, so we will see. He is also seeing the geneticist this week. If anyone has ever taken a child to a geneticist, you know that it is one of the most terrifying places to take them. They measure and discuss almost every feature on their body. You begin to think that you have bred an alien and they are trying to figure out exactly where they are from. It's not that bad, but almost. Everything is looked at and you begin to wonder if they could find something wrong with everyone. I have been doing alot of research on the internet which is not good for a Mom to do. It can scare you. I do still feel that Sam and his metabolism is not quite right. He continues to have the same symptoms that I am worried about such as sweating terribly,breathing too hard, tires out easily,extremely thirsty,etc,, I did come across another Mom's blog whose child was having very similar symptoms as Sam. Anyways, they are going through the same things we were going through with Sam when he had to have his feeding tube put in. He is only 1, but it reminded me of all the things that Sam has been through and how God has brought us through so much. He is an amazing God. As I think back of what He has done for us and brought us through, I am reassured that He is going to bring us through once again. Sometimes, my prideful heart will wonder why the Israelites ever doubted God. Didn't he continue to deliver them time after time? Yet, they doubted Him. They couldn't grasp the fact that God would get them through. They lost their hope, faith, and trust. They were probably worried about their own kids and their kids' futures. They tried to take everything into their own hands, even though God was right there. But that same worry and lack of trust kept them out of the Promised Land. That worry and fear can keep us, too, from seeing God's Word fulfilled in our own lives. Lord, help me to know that You love Sam more than I do. Help me trust you with his future and continue to remind me of his past. You have delivered Him through it all and will continue to do so. II Corinthians 1:18-20

Yea For Sam!

Oops... Today, I accidentally scheduled two appointments for the same time for Sam. They both were coming to the house. I can be so scatter-brained sometimes. So, we had to cancel Sam's speech therapy. I hate that we will not have it this week. It is what he needs most. Sam's coordinator and an occupational therapist came over for an evaluation to see if he needed occupational therapy. Sam did really well with all of his fine motor skills (things like holding a pencil, stacking blocks, feeding himself with a spoon, drawing, etc...) He actually scored average. Yea! His self-help skills(putting a shirt on, washing his hands,potty training and brushing his teeth) were a little low. The therapist said that this is because his physical development is behind and that he just started walking. She said that walking usually has to be mastered before these will fall into place. She did believe that Sam will catch up on these soon. Bottom line: Sam does not qualify for Occupational therapy at this time. Yea! It was great to hear how well he was doing for a change. I needed to hear some positive things. She was very impressed with his social skills and his fine motor. So, Sam will continue receiving speech, physical, and play therapy for the next year, but no occupational therapy. Way to go, Sam!



We are going to begin potty-training Sam after our little vacation next week. The other kids began when they turned two and did well. Sam, on the other hand, I don't know if he will notice that he is wet. He has never seemed to care to have his diaper changed. I have tried to sit him on the potty and he gets terrified. I don't know why he is scared of it. I am going to have to be a little creative to make it very fun for him. We'll see what we can come up with. I know he'll get the hang of it eventually. He's a smart cookie like his DaddyMommy.

Evaluations

Sam had his evaluation done this week on his fine motor skills, gross motor skills, speech, and cognitive skills. These evaluations are so scary. You are told what level they are on and how far that they are behind. It has yet to be a pleasant experience. Everyone involved in the evaluating is so nice, it's just that the results are often not what you want to hear. They recommended that Sam continue in the three therapies that he is receiving as well as start occupational therapy. His results for cognitive was 27 months which is right on target. But, as far as the rest, they ranged from 13 months to about 20 months. Whenever we get discouraging news, I try to only spend one day upset. Then, get up, give it to the Lord, and move on it. This isn't always the case, but I do try. So, the positive outlook is that it could have been much worse. Sam could have ranked much lower cognitively or on the other hand, he could have just barely passed which would have disqualified him from getting the therapy that he needs.





Today, Sam went to the plastic surgeon. He said he thought all along that Sam should have been on the growth hormones. He even contacted Sam's pediatrician several times about it. We had no idea! He said he has seen such great results with it. That is always good to hear. He wants to correct the palate eventually. It is too short on one side. He thinks that Sam is still too small for another surgery and we will see him again in three months. I am glad to wait.



Thank you all for praying with us! I cannot thank you enough.

Weight Gain

Sam has gained 4 pounds since these shots have started. No, I am not kidding. He has increased his body weight by about 20 percent. Jeff and I were carrying him yesterday and could not believe how much heavier he felt. We took him to the scale and sure enough, he has gained weight. He is still adjusting to the shots. When he sees me getting it ready, he will start to cry. Hopefully, he will get used to them a bit more. I know, who gets used to a shot, right? Thank you all for your prayers. Tomorrow, Sam will be having a speech evaluation. On Wednesday, we meet with the plastic surgeon. Please pray as we make plans for Sam's future surgeries.

And We're Off...

This morning I spent about 2 hours learning how to give a shot. I feel like I could go right into nursing about now. After practicing on a fake behind, which was definitely fatter than Sam's, I feel pretty prepared. I gave him his first shot right before his nap. He hardly cried at all. In fact, he has already outgrown the clothes that he was wearing this morning. :)

Tomorrow, Tomorrow....It's only a day away

The shots have been delivered and we will begin administering them tomorrow. The home health nurse will be out tomorrow morning to teach us how to give them. We have been told that we will see pretty dramatic results in a couple of months. Please pray that God will protect Sam from any side effects of these drugs. As with all medications and vaccines, there are so many unknowns. Yet, we as parents, have to make those decisions based on what we do know. We do know that he is not growing
and that it has been hard on his body. We do know that he will have more surgeries in the future and we want him to be as strong as possible. Parenting sure seems to be tough sometimes. But, we are sure that God's grace and mercy will help guide us through.

Sam is really working hard at keeping up with his brothers and sister. He is going through a bit of a stubborn streak and is proving to give all of the therapists a run for their money. Truthfully, I'm afraid that we have spoiled Sam rotten. We are cracking down, though. Thank you all for your prayers.

Sam in the Pool

Sam's Upcoming Treatment

Well, the last few weeks have been spent getting Sam approved for the hormone shots. The Doctor ordered an x-ray of his wrist and hand to see what age his bones were. The results were that his bone size shows that he is 1 and a half when it should say 2 and a half. The Doctor said that this confirms that he is not growing the way that he should. These shots are so expensive. We are so thankful for the insurance that we have. Our insurance does cost us a good bit each month, but the cost of these shots will make it well worth it. The cost per year is about $20,000. Wow! These will be delivered to our house on Tuesday. A nurse will be instructing us on how to administer these shots. Please pray that these shots will cause as little pain as the doctor told us that they would. Sam is doing pretty good. He is walking great. His speech needs alot of work. We are so thankful for his therapists. The therapy that he is currently having will only be available until he turns 3. Then, the program will be offered through the public schools. I will be meeting tomorrow with Sam's care coordinator as well as representatives for the public school program. Please pray for us as we make these decisions. I don't want a label on Sam. The term "disabled" is not one that I am very fond of and it is very hard to hear that term associated with your child. Yet, we do want the top notch help that they can offer for Sam. All of these decisions to make on your child's behalf can seem a bit overwhelming. I know that ultimately God is in control. That is such an easy statement to say, but a very hard one to always understand.

No I V

Well, the nurse could not get the IV in his veins. Sam's veins are so tiny and everyone seems to have such a hard time getting the IV in. The nurse was so nice and only tried when she thought there was a chance of getting it. Sam screamed and screamed and soaked the whole table with sweat. He is now pretty aware of what is about to happen now when he goes to the Doctor. So, we are going to wait until the Doctor is back in town so that he can try. This will be on the 21st.
Yesterday, when Sam and I got back from the Doctor, Sam had another "episode" of screaming for about an hour. It was a pain scream. His breathing became a little "off". I don't know how else to describe it. There was no stopping him either. His stomach was hard as a rock. His head was soaking wet from sweat and he got so pale. After the pain went away, he drank everything in sight. He even woke up last night twice so thirsty and drank a ton of juice. Most of the time I can convince myself that nothing else is wrong with Sam. But yesterday and days when this happens, I know that we are missing something. I just want him to quit having this kind of pain. I have no idea what it is, but I am so determined to get to the bottom of this. I'm going to call the Dr. today to see what we can do.

Sam's Upcoming Test

Sam's doctor called us this week with a request to bring him in so that they could run another test. He will not be able to have any food or drink for 12 hours. This will be pretty hard for Sam. He always wants to eat and drink. He will be given an IV and some medication that will make him pretty nauseous. Then, they will give him some medication to make him sleep. Please pray that they get the IV in right away. He has extremely small veins which always makes it difficult. I'm going to bring our DVD player so that he can watch one of his Praise Baby DVD's. He loves them. This test will measure the amounts of growth hormone that he is producing. The doctor explained to us that the pituitary gland produces this in spurts throughout the day, so they will be checking it the whole time. Please pray that God will give us clarity on making decisions for Sam.
Sam is doing so great walking! He wants us to clap for him all of the time. When he walks, he puts his hands on his butt. He thinks that it is so funny. His physical therapist is working with him climbing on the swingset. Sam is getting the hang of it. He does such a great job with Sam as well as teaching us different techniques to work with him on. God has blessed us with 3 wonderful therapists to help Sam. They all love Sam and are all so nice. Sam especially loves all of the toys that they bring. They always seem to have the neatest little toys. They each have such a gift for working with children.
I'll keep everyone updated on the results of this test. Please pray that it will go well and as pain free as possible.

Where do we go from here?

Let me preface this by saying that Sam sees quite a number of specialists and we visit doctors' offices every week. Almost all of the doctors that we see have very warm and friendly atmospheres for their little patients. Yeah, this is just like saying, "No offense, but..." (I hate it when people say that!) You know that I'm about to say something that is not so positive. Well, yesterday Sam had his appointment with the endocrinologist. As you may recall, this is the office that reminds me of the Seinfield episode with the man who yells,"No soup for you!" All of the patients' parents seem to be afraid of the receptionists. The sign tells you to sign in and to be seated. As you sign in, it seems like there must be an unwritten rule that you cannot make eye contact with any of the receptionists. They will not look at you unless your name was called out. I truly felt bad for the parents who brought siblings along. They must have not seen that other sign. Well, our appointment was at 2:00 and it was 3:00, but I was scared to ask them if we were scheduled for the right time. Oh by the way, they literally have a bulletin board that tells you that they rank in the top whatever for their professional services. You know if they have to have a bulletin board to tell you how nice they are, that that is not a good sign(literally). Well, I eventually mustered up my courage to ask her if we were there at the right time and she said yes. So, by 3:15, we saw the doctor. Sam had lost another pound with no noticeable growth in height. He seemed to be pretty perplexed at what to do. He wanted to run another test on Sam, but did not feel that he could get an I.V. in Sam because his veins were too small. So, his plan was to wait until July to run the next test. This is also when we will be seeing a geneticist. So, to make a long story a little shorter, nothing was done and Sam is still not growing. He did tell me that some kids just don't grow,even with hormones. So, where do we go from here? We're not sure.....

Shoes

Sam is seeing the endocrinologist today. We will be measuring him and taking another blood sample to see if his growth hormone levels have changed. If they have not changed, we will begin the daily injections of growth hormones.=( One good thing is that Sam recently outgrew a pair of shoes. Big Deal? Yes!!!He has been wearing the same pair of shoes since he started to wear shoes at about 6 months of age. We just bought a new size for him. It's funny how these little steps make us excited where as with my other kids, we dread when they have to get new shoes. Eli and him wear the same size clothes, which makes sorting laundry extra fun.=) They are looking more and more like little twins. Everyone thinks that they are. HIs walking is continuing to improve. He loves to show off and take a few steps but is very stubborn when it comes to actually practicing. He likes for it to be on his own time. I don't know where he gets that from.(me?) AS far as his speech goes, he is still struggling with saying most of his consonants. We are working on some daily massaging and stretching in and around his mouth to improve the muscle tone.
Thank you all for your prayers and I will do better at keeping this blog and my other blog updated.

Our Easter Picture

The Meltdown

On Wednesday, our family went to get our Easter pictures done at a place called Portrait Innovations. I like this place because you get your pictures back within 15-20 minutes. Getting our pictures done is an all day experience. Our day started with Sam getting his physical therapy that morning at 8:30. His therapy is supposed to last until 9:30 but his therapist is often runnng behind so it normally lasts until 10:00. Well, Jeff called at about 10 and asked me what I'm wearing for the pictures. What was I wearing? I hadn't planned on being in the picture. But, Jeff informed me that if we were to die , our kids would have no recollection about what their parents look like. (I'm just hoping that we hang on long enough so that I can lose the weight that each of them has helped me gain. Then, I'll get our pictures made.) Anyways, being the submissive wife that I am, I told him I would do my best but that I would have to find something that matches what the other kids were wearing. So, I got all of the kids in the car and headed to Old Navy. It's almost impossible to try anything on with all of the kids, so I grabbed a shirt that I thought would work and we were on our way. They were now starving because it was almost 1:00. So after lunch and a few spills and cleanups, I laid Eli and Sam down for a quick nap and bathed Susanna and Luke. I could not bathe them in the morning because too much happens between that time and when we actually needed to go. Their cleanliness only has about a 1 hour window. So, I curled Susanna's hair and woke up the other 2 from their nap. Jeff got home and helped me with Sam and Eli's bath. I put them all in their non-picture outfits(in case the clothes that they are getting their pictures made get messed up on the way). Then, I realized that we would not have time to change their clothes once we got there, so switched them back. I also realized that Jeff and I had no time to change either. So, we got there just in time. They were all looking their best. Sam quickly saw the Lego table that they had in their waiting room. As soon as he sat down to play, they were ready for our pictures. Sam began screaming at the top of his lungs. We could not get him to stop. I could already tell that the lady was not thrilled to have to work with so many young kids. She told her co-worker that she was going to need some back-up. Next thing we know is that there are 4 workers trying to get Sam to calm down. I asked if they had any bubbles, but they had none. Maybe next time, they will. Sam screamed for about 30 minutes at the top of his lungs. This was a pure angry scream. He was so mad and his body was so stiff. We did tell him that we would take him to play on the lego table and he smiled for a quick second. That is when the only group photo was taken. It actually turned out pretty cute but you can see a tear on Sam's cheek. I told them how sorry I was and how this is just not like Sam. The lady looked at me like,"I've heard that one before." That is the truth! I have never seen Sam ever act like that before. Jeff took him out to the car and we got every one else's individual pictures done. Sam's will have to wait. I will post the picure on here tonight when Jeff shows me how to do it. Anyways, Sam has been happily playing with his legos at home ever since. And this is why our picture experience is an all day experience.

Speech?

I just realized that Sam's neurologist appointment is March 19th and not this week. Tonight, Sam kept standing up by himself and taking a step or two. After he falls down, he claps his hands. His speech therapist has just given us some new stretching exercises to do with Sam. She said that this would help with his mouth being able to close properly which would help his drooling. She also said that his face and his mouth are so tight that he may not be able to say his words correctly until we have another surgery. But our plastic surgeon says that he will not do surgery until he hears Sam talk. So what do you do? Sam gets so frustrated with us when we don't understand what he is saying. But it is a good sign that he is trying to communicate with us. He doesn't seem to want to sign so much anymore but he is not able to say most of his words. Most of them sound alot alike. Our therapist said that we will probably need to make a set of cards that he can point to in order to help him tell us what he wants. I sometimes worry if this will set him back evem further but we'll just have to keep making him try to say the word, too.

My Dreams vs. His Vision

Anyone who has a child that is any less than the picture of "perfect health" can tell you how hard it can be at times but yet a gift beyond compare. That is what Sam is. He has taught us so much and I'm sure will continue to do so. Sometimes, well most of the time, I feel so inadequate and unable to help him. One thing that the Lord has told me is that I have to let go of is my dream of him being just like other children. No stares, no health issues,etc...Just a child who will fit in. You know that phrase,"Let go and let God." Maybe my hopes and plans for Sam are way smaller than what He has in store for Him. I know that they are. God has put 2 other women in our small group that have gone through what we are now going through. One woman, Kim, has been such a huge inspiration to me. She is ALWAYS loving on Sam and telling me how beautiful he is. She studies up on things for Sam. Well, her 30 year old son lives with her and has muscular dystrophy. He was diagnosed in early childhood and is progressively getting worse. He is now having trouble swallowing. She will tell you how bitter she had become(there were other circumstances,too) She had nothing to do with God. This past year she and her son moved to NC to be near her daughter who was attending our church. God has since changed her life. I'm not kidding when I say that she literally glows. Her son has so many problems way worse than any Sam has ever faced yet she continually looks out for Sam. It's little things like this that I know that God is telling me that He knows and He cares and Sam is in His control. Lord, help me to replace my vision for Sam's life and see the vision that you have for Him.

Shooting Star

Sam is still working on taking steps. I guess we celebrated a little too soon. Sam seems to have his own timetable. I know he'll walk when he is completely ready. As far as our Doctor visits go, we will be seeing the neurologist next week. They sent us a million papers to fill out on Sam's history. Our pediatrician called yesterday and asked how Sam was doing. I told him that he has been increasingly thirsty,sometimes waking up 2-3 times a night as well as laying down when he's playing with his toys and sweating more. He said that he thinks Sam needs to be put on the growth hormones sooner than April. This may help the symptoms. I still don't understand why he is having such a hard time. It seems like there is definitely something wrong and I don't know if we're getting to the underlying cause. I don't know, maybe the lack of hormone is causing all of these problems. Sam continues to be an amazingly happy child in spite all of this. One of his favorite things to do is wrestle with his Dad and brothers. He laughs nonstop. He thinks that when he puts both his arms out he is shooting them. It is so funny!

Me and My Car

A Few Steps...One Giant Leap

Today, Sam took a couple of steps. His physical therapist brought him a bag of candy and Sam wanted it sooo bad. He just kept crying and we could hardly get him to do anything. Then, Ty (his therapist) asked me to hold the candy while he held Sam. Sam was so upset that he forgot how afraid he was and walked to me like it was nothing. I could not believe it! We couldn't get him to do this again tonight but at least we now know that he can do it. Way to go,Sam! We are so excited! Whoo hoo! Oh, and he also sucked out of a straw. This is not unusual for toddlers, I know, but it is very hard for a child with a cleft to be able to do it. His speech therapist,Ms. Erin will be excited to hear about this. As you can tell, I am excited too. That's why I'm not sleeping right now. Good night!:)

Our Appointment

On Tuesday, Jeff, my Mom and myself went to the appointment with the endocrinologist. He explained to us that Sam's growth hormone levels are undetectable. He said that he could not explain how this has happened but that his pituitary gland is of normal size and that it makes him a candidate for growth hormone. The tricky part is that this is a daily injection until Sam reaches adulthood or until we feel that he should no longer be on it. The doctor told us that since the shots are incredibly expensive almost every insurance company will fight this for a while until they have absolute proof that he is not growing. They have this, thankfully, because Sam has many records of his height and weight throughout the past 2 years. Jeff and I have felt for a long time that there was definitely something wrong with the way that he was growing but found it very difficult to get them to take it seriously. The doctor wants us to start this treatment in April and told us that within 2 years he would be where he should be in size. It's a little scary having to commit to something for so many years,but we will have to seriously consider this. We will be seeing a neurologist in the next week due to the Doctor's concerns with him being delayed with his walking and other things. Please continue praying for Sam. I know God has such a special plan for him no matter how scary the path may be to get there.

Appointment

Today, Jeff and I are going to see Sam's doctor about his test results. The doctor called us last night and asked to have a meeting with both of us. We do know that his hormone levels are pretty low. He said that he would discuss this with us and go over his MRI with us. (This is an MRI that Sam had done quite a while ago.) I'll try to update later tonight. Also, Sam will be seeing the ear doctor tomorrow to recheck his hearing.

Hopeful

Well, we got back from our little trip. Now, I'll have to admit that I am a little skeptical. It's just so different from anything that I have ever seen. The Doctor told us that Sam has a part of his brain that is not formed properly and that it is affecting most of his systems. He also asked me to hold off treating him with any growth hormones until I give it a chance. He gave me 2 different bottles of stuff to give him 3x a day. I was pretty taken back when the receptionist goes, "Oh honey! I see why you were so worried about him. He looks terrible! Oh no!Have you seen a geneticist?" I don't know how I was supposed to take that? By how it sounded, I thought I might be too late. She was very nice though. The doctor also informed me that I had a strep infection in my brain. Or as my mother-in-law thought he said was stress in the brain.:) Yes ! I do have that for sure.:) I am very hopeful that this works.

Kings Mountain and New Years Resolutions

Today, Jeff, myself, and the kids are going to Kings Mountain to take Sam to the Doctor. This is a doctor that specializes in natural medicines. Please pray that we will be given a course of direction for Sam. We are excited about this because the lady we talked to assured us that they would be able to help. That makes such a great impression. She didn't say,"We might be able to or we'll try." We love to hear,"We will help!"
Now, I do have alot of faults, but one thing that I normally have is patience. Well, not today. Sam had labs drawn on him 2 weeks ago. The doctor was very concerned about Sam and gave me a couple of scenarios of things that could be wrong with Sam. These were not normally things that you want to think about your son having to deal with. Knowing that, he assured us that we would get the results in a week at the latest. While I was in the office, the Doctor also told me that he had just gotten off the phone with a very angry mother. He said that she was upset that she had gotten the bill for her child's appointment but had not seen or heard about any of his test results. He then told me that it was his New Years Resolution that he would do better with doing that. This made me a little nervous but what can you do with the fact that that he is the only specialist in our area? AND, surely since he told me about this, he would not do the same to me. Right? Well, I called the office today and they told me that the results were in last week, but that he had been off for a couple of days. Then, I asked if he could read them today and they told me that he was off today,too. They also told me that he is very behind and may not get to them tomorrow. No one else can read the results. Now if someone make ridiculous amounts of money can they not go to work and get their job done? Or hire some extra help? Not to mention how unwarm their office seems to be. There are signs that remind you to bring no other children to the office, do not call the office for results,do not be late. The office kind of gives off the feel "No soup for you!"(Seinfield) I know that this is alot of venting but one of my purposes of this website is to journal every ordeal we face with Sam. That way, I can help some one else in a similar situation. Let's just say that I will not be referring this Doctor to anyone. AND...my New Years resolution is to no longer see mediocre doctors and to find the very best ones in this country. No matter what!!!!!!!

Still waiting

WE are still waiting to hear from Sam's tests and will post as soon as we know anything. We did call the Doctor in Kings Mountain that specializes in alternative medicine. I think that I spoke to his wife. She told us that she would put Sam on the top of the waiting list and as soon as they get a cancellation she would give us a call. She said that she felt that they would be able to help us. I hope so. Sam is still working on balancing while standing up. He is still pretty reluctant to do this, but as soon as he accomplishes this, he should be walking soon after. We love you guys and are thankful for each of your prayers.

Sam's Tests

On Thursday, I took Sam to the endocrinologist. He was weighed and measured and he didn't seem to gain in height or weight. Dr. Parker did the blood tests himself and got it the first time. This is such a rare occurrence. I was so excited that he only had to it once. I'm sure that Sam was as well. We are now waiting to hear from the tests. He said it could be a week, but that he would let us know as soon as possible. He suspected that Sam has low growth hormone and that he would probably need to be given this. I am trying to research this and did find out that this can some times happen after surgeries. I need to research if there are any risks to giving this hormone. If anyone has any information about this, Please send it our way. We are also trying to get him to an alternative doctor that Papa and Gramma Robinson have referred us to. Our pediatrician has said that the cardiologist wants to see us back if these tests come back normal. He does not think that the PDA would be the cause of this but he may need to take further action if necessary. Please continue to pray for Sam. He seems to get worn out so easily lately. I am hoping that he is just coming down with something. It is so hard not to worry about every little symptom he has. Hopefully, we'll get a diagnosis soon and Mommy can quit being a worryer(is that a word?:) I love you guys and am so thankful for your prayers!

Update

Sam's pediatrician called Jeff yesterday afternoon and told us that he would contact all of Sam's doctors and coordinate every ones opinions on what is the next step to take. We are so grateful for that. It is so hard to update every doctor on what all of the other doctors are saying. I think this is a great move in the right direction. Please continue praying for him. He has been increasingly thirsty and hungry all of the time as well as sweating terribly. We will be seeing the endocrinologist tomorrow morning. He will be running several blood tests. No one seems to be able to take his blood, but I'm praying that they will get it the first time.
Sam's speech therapist, Ms. Erin, said that Sam has made a 180 turn in communicating in the past month. He is so funny about how he signs that he wants to drink. He waves his hand in front of his nose as if telling people that something stinks. We've got to fix this before he offends some one.:)

P.S. I know that Sam's hair is getting a little long. Please, could some one let Jeff know? I think he is living his dream through Sam's hair.:)

Physical Therapy

This week we are working on Sam standing up by himself for small amounts of time. He is still pretty scared of anyone letting go but is doing much better walking while holding on with only one hand. His therapist thinks that he will be walking soon. We can't wait to be able to post about that.

Ear Doctor

Yesterday, we took Sam to the ear specialist, Dr.Sicard. He told us that Sam had such a bad ear infection that he could not conduct the hearing test until it cleared up. It is so hard to know when Sam has an ear infection because he does not get very fussy. He will see him back in 2 weeks. He also told us that Sam would need to have his tubes removed and new ones put in and we will discuss that when we come back in. We will be seeing the endocrinologist next week and the plastic surgeon the following week. PLease pray that we will find out what is causing his lack of growth and his delays. He is doing so well with his speech therapy, especially with his signing. He is much less frustrated now that he can communicate with everyone better. We are so thankful to have wonderful therapists to work with him. He is still pretty fearful to take any steps without help. We are hoping that he will be walking soon.

The Happiest Boy in Town

Sam is beginning to show signs of being the ham of the family. Yep, I thought Luke had it in the bag but as Sam is learning to communicate he is slowly taking the crown for hamminess(is that a word?) On Thursday, while Luke and Susanna were at preschool Sam, Eli, and I ventured out to Target. Eli sat in the front of the cart while Sam was standing in the back. (this was the first time he had ever figured out that he could stand up in the cart) He was so proud of himself and wanted everyone to notice his accomplishment. He didn't seem to realize that this is a fairly normal thing for 2 year olds. Well, in order to get everyone's attention, he would yell hi and wave to them. Now, I know that you are probably picturing a little boy speaking in a sweet soft little voice but no, not Sam. He was yelling at the top of his lungs HIIII!!! Most customers would offer us a nice smile and be on their way. But there were some who seemed to think that maybe if I don't look this little kid will shut up. But not our dear Sam. He yelled louder and louder until everyone who crossed paths with him would acknowledge him. Once he had their attention, he would continually say hi and the poor customers didn't know when and if they could walk away. At first this was pretty amusing but soon became hilarious seeing all of the customers duck away as we approached near them. It turned out to be a great way of having the aisles to ourselves.:)


Jeff and I decided to try and do this blog thing so that we can keep track of his progress and to keep all of Sam's friends and family updated on his progress. Thank you so much for your prayers. God is doing an amazing work in Sam. That is one thing that we are sure of. Sam will see his ear specialist tomorrow afternoon. His ear has been bleeding a little and they will also be testing his hearing once again. We love you guys.