Easter Seals

Well, I will start by saying that John and I agreed, we could have heard much worse today. I really feel okay about how things went (thanks for your prayers) and I only teared up a few times, but it was more just about being in the situation than about what they were actually saying. They started out by putting him on his tummy to see how high he would lift his head and the little stinker just rested his head on his hands and chewed on his fist. No amount of coaxing could get him to lift it. They did several tests and then gave me their recommendations. I'll start with speech - it was the best. She said he is scoring on age level for both expressive and receptive language and that she has no concerns for him. She noticed that he responds to sound, his name, and faces. She said he talks better than any baby she's seen and she wished she could record him and play it for parents to show them how a baby should be talking at that age. She doesn't need to see him back for 9 months. The physical and occupational therapists both said he qualifies for therapy and they recommend it. The majority of his problems, they think, comes from lack of head control. He is behind in visual motor aggression skills (tracking, etc.), he scored at a 1 month age eqivalency for stationary skills (head control) and 2 months for locomotion skills (kicking, moving arms, etc). They said they think we're in it for the long haul as far as therapy is concerned but they think he has really good potential to make good progress. Now John and I have to make the decision as to which therapists to use, Easter Seals or the one here in Cabot if they even have openings. It's a hard decision to make since we just want to do the very best thing for Max and we don't know who has better therapists.

I mentioned how his left side sometimes lays limp and they asked if he had had another EEG to rule out seizure activity. I don't know why I never thought of that. If it is a seizure, it doesn't look like your typical seizure. I'll have to call the doctor and see what they think of that.

We appreciate all of your prayers for this evaluation and for us. I'm still trying to get more pictures on the albums, but it's not working for some reason. I'm also trying to figure out how to get videos on here. Hopefully I can figure that out soon.

Always praying,
Kelly

Wonderful, Wonderful Sleep!!! (and other things)

Getting ready for Santa!!

Cute hat, but it weighed his head down when he was on his tummy. He kept trying to lift it higher, it just wasn't happening.

Max used to sleep until 4:30, I'd feed him then he'd sleep till about 7:00. That wasn't bad, I could function pretty well on that amount of sleep. Well, we got so out of our routine from all the traveling, plus he was sleeping in his pack-in-play, which he is almost as long as, that at night he would wake up at least every 3 hours and often times more than that. Last night he slept from 10:30-4:30 and from about 5:00-8:30!! I can't remember when I last felt so rested! I do, however, long for the day when he sleeps through the night.

I can already see his little personality developing. Sometimes when I'm holding him he'll cut his eyes over to the side and look at me, then smile the biggest smile, then turn and bury his head in the crook of my arm. He'll do it over and over as long as I am laughing at him. It's the cutest thing.

I think I've already mentioned that Easter Seals is coming Thursday. I feel pretty good about how Max is developing and I don't know if he's doing everything that he should be, but I do know that he is making progress. It seems like every day he is getting stronger and moving better. He still occasionally has trouble moving his left side. It will lay limp while the right side is moving, but I wonder if that might show up more at times when he doesn't feel good. I would appreciate it if you would ask God to prepare our hearts to hear whatever the therapists have to tell us, whether good or bad.

I would like to take a minute to tell everyone who has sent me emails that I have read every single one and deeply appreciate every word. If I haven't emailed you back yet, I do plan to. I appreciate all the encouragement and stories about your own children or children you know who have come so far after a rough start.

We read a verse in Wednesday night class a few weeks ago that has really stuck with me. It's from Romans 9:17-21.

"I raised you up for this purpose, that I might display my power in you and that my name might be proclaimed in all the earth...But who are you, O man, to talk back to God? Shall what is formed say to him who formed it, 'Why did you make me like this?' Does not the potter have the right to make out of the same lump of clay some pottery for noble purposes and some for common use?

Doesn't that just say it all?

May God bless you as you go throughout your day.

Kelly

3 Months

sitting with daddy's help

I did get a few smiles out of him, but every time he would smile he would lose his balance and wobble over to the side so I never captured it on camera.

sitting in his bumbo

Max turned 3 months on the 22nd.

November 26

Sorry it has been so long since an update. Max and I have only been home 4 days out of the past 2 1/2 weeks. We spent several days with Karie and her family and then went to Tennessee for several days for Thanksgiving with my family. It was a week of "firsts" for Max - his first trip to Lebanon, first time to meet his two great-grandfathers, Granddad and Papa, first time to meet many of my good, good friends, first time to go to the church I grew up in, first time to wear some of his camo outfits and first time to get a picture with a deer his Papao killed - as close to hunting as he will get for quite a while if I have anything to do with it :) . We then left my parents and went straight to John's parents for their Thanksgiving. We spent 2 nights with them and had a great time. Saturday we went with Nanny Di and Aunt Jill and did some Christmas shopping and Max handled it like a trooper. He didn't cry once, that I remember, and was really in a great mood all day. Next year probably won't be quite so easy if he is anything like his cousin, Daniel, who would probably not tolerate being in a stroller or carseat from 8:30-5:30.

There really is no new news right now. Max is getting so strong. He's rolled over a few more times, we even got it on tape twice. The physical, occupational and speech therapist from Easter Seals are coming back this week and I think they are evaluating him again. I'll definitely update after that. We finally got their written report in the mail last week. It really sounded much more positive than what they said to me the day that they came the first time. I'll try and post some pictures tomorrow.

New Pictures ~ November

New pictures have been uploaded. Some are of Max's first road trip to see his cousins, Annie & Daniel. He was excited that Papao and GranGran got to come too! See the November album. The picture of Max on the floor is right after he rolled over for the 1st time from his belly to his back!!!!!

Good News!

We got a good report today. Dr. Burson said the ultrasound showed that things were looking good. The blood has dissolved and it appears that there are no holes in the brain where the blood was. He said that an MRI or CT scan would show that much better than an ultrasound, but he doesn't see the need to do that. He also said that the ultrasound today showed that his brain looks better than it did from last ultrasound he had in September. Thank you, God! He said he doesn't need to see him back for 6 months! We were very pleased with how the day went. We are so, so grateful for all of your prayers!! It really is amazing how powerful prayer is.

Kelly

Tomorrow's appointments

We are taking Max for an ultrasound in the morning and then an appointment with Dr. Burson, the neurosurgeon, tomorrow afternoon. Please pray for these 2 appointments and that we will get positive news from the ultrasound. Specifically, we would like for the blood to have completely dissolved leaving healthy brain tissue. I will try and update tomorrow when we get home.

Getting stronger every day!

11 weeks old












Sitting in his daddy's lap last night. He's getting good at holding his head up.

















Yesterday Max decided to hold his head higher than he's ever held it before when he's been on the floor. Yay Max!!!

God is Good

Anyone who knows me well knows that I can listen to the same song (if I like it) over and over again and never get tired of it (poor John). I have been listening to "Praise You in this Storm" and have had it on repeat in my cd player in my car for the past 2 months, but on the way to the doctor today I took one of Max's cd's and I think I have a new favorite. I thought I'd share the words.

You Are Good

When the sun starts to rise and I open my eyes You are good, so good.
In the heat of the day, with each stone that I lay You are so good.
With every breath I take in I'll tell You I am grateful again.
When the moon climbs high before each kiss goodnight You are good.
When the road starts to turn around each bend I've learned You are good, so good.
And when somebody's hand holds me up, helps me stand You are so good.
With every breath I take in I'll tell You I'm grateful again
Cause it's more than enough just to know I am loved and You are good.

So, how can I thank you? What can I bring? What can these poor hands lay at the feet of the King? I'll sing You a love song. It's all that I have to tell you I'm grateful for holding my life in Your hands.

When it's dark and it's cold and I can't feel my soul You are good, so good.
When the world is gone gray and the rain's here to stay You are still good.
So with every breath I take in I'll tell You I'm grateful again.
And the storm may swell even then it is well and You are good.


I emphasized the parts that really stand out to me right now. I think sometimes I get so caught up in asking God for things I want for Max and things I think Max needs that I forget to remember to thank Him for all of the many wonderful and mighty things he has already done for him. He really is so good. May I never, never forget to thank Him for holding Max's life in His hands. I'm gonna go hold that sweet baby and thank God for him.

Praying,
Kelly

Update on Prayer Request

Kelly & John took Max to their pediatrician. They then sent them to see Dr Burson. He feels that after evaluating Max that his shunt is still working as it should. He thinks that Max has just picked up a virus somewhere that is causing his spitting up/vomiting. He felt his fontanel (soft spot) and said that if Max's shunt wasn't working it would be bulging, it wasn't. Thank You God. Dr Burson said that if Max's shunt was malfunctioning that he would be having projectile vomit. Dr Burson spent more time with them today than he has in the past. Kelly said that he even took some time to play with Max. Please pray for Dr Burson, pray that he will be compassionate and that he will not only care for Max's body but that he will care for Kelly & John's hearts and spirits too. Pray that he and his office staff will be helpful in educating Kelly & John and that they will spend time with them. They had to reschedule Max's next appointment with Dr Burson for November 14. They are going to do another ultrasound the same day and couldn't schedule both Max's u/s and drs appt for the 9th.

Please continue to pray for peace and understanding for Kelly & John. It is so hard for them to be so uncertain of Max's future. Please, please pray that God will continue to intervene and that HE will give them peace that passes all understanding. Please also continue to pray without ceasing for Max's precious little brain. Pray that God will completely heal him and that he will suffer no deficits from this experience.

We all thank you for going on this journey with us. For celebrating with prayers of thanks when we are happy and for praying prayers of intercession when we are scared. We love you,

We keep praying,
Karie

Prayer Request

Max has been spitting up a lot today. I called the doctor because throwing up is a concern that the shunt is either malfunctioning or is clogged. Not knowing what throw up is like for a 2 month old, I called and described what he was doing. I also told them how his left side hasn't been moving like the right. They told me to bring him in get him checked out just to be sure it's not the shunt. We would appreciate it if you would say a quick prayer that the shunt is continuing to work as it should. I'll update when I get home.

Praying,
Kelly

10 Weeks Old

Max was 10 weeks old yesterday. In one way it seems impossible that he is that old, in another way, the day he was born seems like a million years ago. John and I have just recently started seeing a difference between his left and right sides. Max is very active with his right side while the left will often times lay limp beside him. The good news is that he can and will move the left side and sometimes he will move it just as much as the right side. I think the older that he gets and the more he moves around, the more we will see these differences. We are trying to make a decision now as to which therapists we should use and we think we will probably try to start therapy pretty soon. We are praying that the left and right sides will both be as strong as they should be and that if there are any deficits that the healthy part of his brain will compensate for those. We are also praying that we will make the best decision about which therapists to use.

I was talking to my dad last night about how we were seeing differences in the two sides and he could tell that I was upset about that. He made a good point that we have faith that God can completely heal Max and we are fully expecting that to happen (even though that may not be God's plan). So even though the doctors told us that they expect the left side to be weaker, when we see that happening we get disappointed. It's not that God isn't answering prayers, because he so is and has. We just don't know the plan he has for Max.

I'm reading a book that Kristin (my sister) gave me. The chapter I'm on now is called The Sea of Discouragement. Here's what it says:

Fresh strength is what every discouraged person needs. Where do you get your strenth? God. He is the true source of strength. The phrase to remember in the midst of discouragement is God's words to Joshua, "Be strong and courageous." God continues, "Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go" (Joshua 1:9). God is the source of our strength. Eventually we come to a place where we're able to say, "This makes us confident. No matter what happens.". . . This is the message of Isaiah: "You will keep in perfect peace him whose mind is steadfast, because he trusts in you" (Isaiah 26:3). This is the message of Paul: "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" (Romans 8:38-39).

Max has an ultrasound on his brain Nov. 9 and then an appointment with Dr. Burson (the neurosurgeon) later that afternoon. Please pray that the blood has disappeared leaving only healthy brain tissue and that there are no empty spots (like cavities) remaining where the blood was.

Sorry for such a long blog. Just wanted to write some things that were on my heart. Please continue to pray for sweet Max.

praying,
Kelly

Happy Fall

100_1658_389_389
Originally uploaded by kagreenrn2.

New pictures of Max are in the October album