Thursday, April 30, 2009

A therapists Dream...

Today we had our second session of OT. We have been working on sitting with hands on his legs, reaching for toys slightly above mid-line, shifting weight will on tummy by reaching up off the ground and pushing buttons. When Carla came today I was VERY excited. Josh and I have both been working very hard on these skills with Malachi. When Carla went over our "homework" she had Malachi do each task. And he did them ALL. She was thrilled and impressed. She also said that He was a therapists dream. Yeah Malachi! We are so proud of him and how far he has come! He still has a LONG LONG way to go, but we are making progress and thats all I can ask for! She said that he is supporting more and more weight in his arms. We got some new things to work on. We are supposed to put him on his knees and have him bear weight on his arms while pushing against a foot stool. We are still working on getting his trunk strength up. Keep up the great work Malachi! We are so proud of you baby!

Wednesday, April 29, 2009

Picture

I have Glasses!!!!!!!

1 week?

Has it really been 1 week since my last post? Wow, sorry I have been slacking! Here is the latest updates...

Peewee got glasses! They came in thursday last week. He hates them and pulls them off as soon as I put them on. Its a huge frustration for me, but I am going to keep at it! I know they are helping him see, I only wish I could communicate that with him! haha

We are going to the ENT for a follow up of an x-ray we got. It looks like Malachi will be getting his adnoids and tonsils out soon. I will find out more details today. I have been asking why he snorts and makes funny breathing noises for so long and they kept telling me it would improve once he got tubes. They were worng and at his 1 month follow up for tubes the doc looked at his tonsils and sure enough they were larger than they would have liked. GRRRRR, its so frustrating!

This weekend is our buddy walk!! We have 17 people walking and we are really looking forward to it! Our team shirts should be here friday and we are walking as team "Malachi's Marching Mohawks" I can't wait to see all our family and friends showing their support! It is sure to be a wonderful afternoon!

Josh and I are also going with our best friends to a Cubs game on Sunday. Its always fun cheering on the Cubs at Wrigley!

PT and OT are going great! Peewee does so well and doesnt seem to be bothers by all the movement. We have had 1 session of each and looking forward to our next session on thurday! We see Speech once a month and she will be helping us with some spoon feeding issues we have. Last time we saw her she seggested we get the Zvib to help oral stimulation. I think UPS says it will arrive on our doorstep today!

Enough about us, we hopw you all are doing well and enjoying Spring. Keep fingers crossed for nice weather this weekend!!

Tuesday, April 21, 2009

Updates Galore

Well friends, we have had a busy few days in the Horton household. Here is goes...

Monday- Malachi had his first OT session. It went GREAT!! Malachi has been working VERY hard at the exercises Karla (the therapist) gave him at his evaluation. Actually everything she gave us to work on, he is not doing. So we got a long list of new things to work on. We got to go toy shopping to get a few more things that would help him developmentally. I can't wait till next week!! Thats all that went on monday.

Tuesday- Malachi started off the day at his eye appt. The doc informed me that Malachi is VERY near-sided and need's glasses. So we ordered 2 pairs and we should be getting them in the next few days! I dont know how in the world we are going to keep them on, any ideas? We spent the afternoon with our good friends and did some shopping. We had an ENT appointment this evening and the doc told me that Malachi needs his adnoids and tonsils out, go figure. I have been asking about this for a LONG time and he never really felt he needed them out. Well it turns out he does and we are going in for an x-ray tomorrow monring and a follow up visit in a wek to set up a surgery date. We ended the day with dinner out with daddy followed by lots of playing!

Malachi is getting back to normal. He has even started shaking his head no and he looks so cute doing it!! I think it is safe to say he is over the RSV. Thats all for tonight. Hope you all have a great rest of the week!!

Saturday, April 18, 2009

Love the sight

We got home around 12 today. Peewee did require oxygen during the night but his sats only dropped to the high 80's. Dr. H told us that sats in the high 80's were good enough but the nurse didnt know. Thats the reason she put oxygen on him. Either way he did good all night and we were able to leave this morning. I can't even tell you how excited I was!

When I walked in the door this afternoon I loved the sight of my messy house. Easter stuff still out on the table and new medical equipment every where. I LOVE seeing my house, I didnt care what shape it was in. Oh how I LOVE to be home.

And I love that my sweet little man is feeling so much better. He was all smiles today and we even heard a few giggles. There is nothing sweeter than seeing joy on my childs face after he has been through so much.

A BIG thank you to all those who visited us!! We are beyond blessed to be surrounded by amazing family and great friends. We can't wait to show Malachi all the pictures of him and his guests, he will know he is loved, thats for sure!!

sweet surprises!

After a week and 1 day in the hospital WE ARE HOME! I dont have a ton of time to blog, but I wanted to let you now that we are finally home! I will post again tonight!!

Friday, April 17, 2009

"Oh ye of little Faith"

Those 5 little words have been said so much. We have all heard them but have we ever really thought about their meaning? I for one never have. But today, after one of the most disappointing days I have had in a LONG time, I realized I am those words. I have little Faith. Its not easy for me to admit my short commings, just ask my husband, but today I realized those 5 little words together describe me. When ever things get dificult, or no end seems to be in sight, I turn on the negitivity and self pity. Today was one of those days, another pitty party to add to the list.

The day started bad. I got to the hospital early this morning.Josh had stayed the night and then left for work early in the morning. I was expecting to show up at the hospital and peewee be completly off oxygen. When I walked through the doors all my expecations fell on the floor. There was my sweet baby, on oxygen. My "dreams" crushed and a hard sucker punch to my gut is what the momment felt like. I did everything in my power to get him off oxygen and to see the nasty clear tubs comming out of his nose was one of the biggest let downs I have ever had. I was (and still am) so ready to go home, so ready for this to be over and so ready for my baby to be healthy again. Ughhh. Another day in the peds unit was my reality. So there I sat all day, feeling sorry for myseft and feeling sorry for peewee. It was a sob fest most of the morning. I was rude to the nurses, the residents and even the doc.(Oh what? you didnt know I have my medical degree? I dont, but I argue like I know better than the doc.) I had nothing nice to say to anyone and I justified it by saying "i have been here a week, I am allowed to be pissed." (please excuse the language) The docs decided to change some of his meds. Malachi took a 2 hours nap ith NO oxygen. I thought "we can totally go home tonight" well around dinner time, my new glimer of hope had been poped. Now they want to moniter him overnight and see if he sats drop. My first response you ask? I said " there is no way he will keep them up." Oh ME of little Faith. I went on for most of the evening with a bad attitude and tears flowing from ym eyes. I didn't enjoy the visitors we had or the smiles I was receiving from my son. I wanted, more than anything, to be told that we could go home.

Oh me of little Faith. A good friend of mine reminded me that I need to take one day at a time. A reminder I so needed! Another friend of my corrected me when I was God was really testing me by saying that He was refining me. Yet another thing I needed to hear. Im here tonight at home, enjoying time to blog and relax while my husband is up at the hospital doing night duty. Before I left I told him "this is all up to you, get Malachi through the night with no oxygen. I was so wrong. God is using this situation to refine me, to chizzle away the doubt and reshape the faith. Even as I write this I am wrestling with doubt and discouragment, but I know that He is using is to change this catipiller into a butterfly!! So tonight I will go to bed and thank God for refining me and showing me how to have faith admist the smoke!

Please take some time and pray for me tonight. Pray that I will be willing to be changed and refined. Pray that those 5 little words that describe me will soon change. And pray for Gods perfect timing and healing on Malachi. We love you all and are praying that you can be willing to be refined.

Thursday, April 16, 2009

prayers needed

Malachi is still in the hospital. Tomorrow it will be 1 week (with a day out for easter). I haven''t had time to write much, but the docs determined that peewee has RSV. He has had a horrible cough for about a week now and he has been weezing. The cough and the weez have fnally gotten under controll now we are working on his oxygen saturation. His sats are great while he is awake its when he falls a sleep that they drop to the 80's. Ughh, so he has been on 0.1 leiters of oxygen while he sleeps. That is all that is keeping us in. Once he goes 9 hours without oxygen we can go home. They put him on a high flow gage with room air and that seems to be doing the trick. Please pray that he can go all night without oxygen so we can go home tomorrow!! This is one momma who is very sick of being in the hospital!! Especially since he is doing great, except for that small wiff of oxygen while he is sleeping. Ugghhh....PLEASE PRAY!!!

Monday, April 13, 2009

Back in

Hey peewee is back in the hospital! This time for RSV! Grrr, is it summer yet? PLEASE HURRY SUMMER!!!!

Saturday, April 11, 2009

24 hours

Well we had a very eventful 24 hours. Friday after our meeting for Malachi's IFSP, we too him to his peds doc. He had a very bad cough and I was worried it was down in his lungs. Turns out he did and he was admitted late friday night. They started an antibiotic and did some breathing treatments. I was so disappointed because I knew the latest hospitilization was going to mean we could go to Easter on my side of the family. We stayed there all day today and was released late this evening. When we got home peewee was very warm and fussy. I decided to take his temp rectally and it was 103.3. He had no fever at all, and now all of a sudden 103.3? Anways I was convinced that the doc was going to want us back uo there. But to my surprise she said we could just moniter it overnight and if he still had it in the AM to call her back. After a cool bath, a cool washcloth and some time in just a diaper and 1 dose of motrin, he is now down to 99.7. Woo hoo. Please pray for Malachi and that we are able to keep the fever down. Tomorrow is my most favorite holiday and I REALLY want to be able to enjoy it with my boys and joshes family.

PS. His meeting for his IFSP went GREAT and It looks like we will be starting this week!! I will write more on that when I have time!! HAPPY EASTER!

Wednesday, April 8, 2009

PT, OT and ST oh my!!

We it seems as if our long battle to get peewee the services he needs is drawing to an end. Tomorrow we go an get a speech evaluation and then friday all the evaluators are comming to our house for a meeting and to write his plan. We will discuss wht services he needs and what goals we want to see him meet. I found out today that we got a new coordinater, our other one got fired! Which makes me happy, she was HORRIBLE! I seriously think she was only at work 2 days a week and called in sick the rest of the time! Hopefully our new lady will be better!!

Malachi's visit to the cardiologist today went well. They did an echo and should be calling me with the results tomorrow. The cardiologist took a quick look at him and said he looked great and there was no real hurry. So, as much as it is killing me to know what, if anything, is going, I will be patient and wait! But i can only wait 1 night, If I dont hear from them by tomorrow night I will call!

Give all your kiddos a great big kiss tonight! We all have so much to be thankful for!!

Tuesday, April 7, 2009

9 months

Malachi is now 9 months old! We have the 9 month visit at the doc. She said everything looked good...then she felt his liver. She seemed VERY concerned at how large it was and how high it was. Sigh... She had me call the cardio. and set up and echo for tomorrow. She thinks he may be in the early stages of heart failure. Another Sigh... I should have know not to expect a perfect visit, we have yet to have one! He is not up to 14lbs 11 oz. BUT the doc thinks he is holding water weight. He did grow a 1/4 of an inch in length he is now up to 24 3/4 inches!

I just have time for a quick update. The sun is out and we are going for a walk, we ALL need some fresh air!!

Friday, April 3, 2009

Update on Bryson

Things went great with Bryson! They were able to fix the 2 blockages and he woke up without any issues. We go to see him last night shortly after surgery and he looked amazing. He was all smiles and didn't seem to be in pain at all. It was almost as if nothing ever happened! They are still hoping to be able to go home tonight!! Praise God for answered prayers!! And thanks to all of you who prayed!! I have not talked to Brysons mom or dad yet this morning, but I will try to up date as soon as I do! Have a wonderful friday!

Wednesday, April 1, 2009

Your Prayers needed


This darling little man is Bryson. He also just happens to be Malachi's best friend! Well tomorrow Bryson is going in for surgery. This is where I need your help! Please pray for Bryson and his mom and dad (Amanda and Will). Bryson has a blockage in his kidney which isn't allowing his kidney to empty into his bladder, this being said, his kidney is larger that it is supposed to be. He had an appointment today and the docs decided that he needed to go into surgery tomorrow. Please pray that God will comfort nerves and grant his family a sense of ease. Please pray for the surgons and nurses who will be in charge of caring for this little man! I am fortunate enough to be able to spend the entire day with them tomorrow as they prepare and wait. I hope I can help confort them and ease their fears!! Thanks ahead of time for all the prayers!!

Happy April!

Wow, I can't believe its already April!! Things are going well in the horton house. We are back to a normal routine now that Josh is back to work. I miss his help but am happy to be able to do things my way again! haha

Malachi has started doing a few new things. He has found his feet! He lays on the floor with his legs and arms in the air. Its so cute! He is also bearing weight on his legs AND keeping his trunk straight! He is also trying to sit up while laying in my arms. This makes feeing difficult as he only wants to be sitting up. He is also getting better at reaching for things mid-line. We are soo happy to see progress, although it seems small, its really huge for him! Way to go Malachi.

Next weekend is Easter and I can't wait for the friendly little bunny to make a stop at our house!! Want to know what the Easter Bunny is bringing Malachi? A summer wardrobe from Gymboree. There is a GREAT sale going on right now, get there fast! I got a few things for 3.99 which is a HUGE deal from there! They have a rock star line and I think I bought everything!! LOL a little drummer wanted shirt, a my mom rocks shirt so cute I cant wait to put him in it all! Thank you Easter Bunny for giving me an excuse to spend more money on clothes for my litte fashion model!

Speaking of the prince, he is up and needing his afternoon baby food feeding. Whats for lunch today? I think a little mixed berries! Have a wonderful April 1st and try not to get "fooled"!