2010

Post-Op Day 4!

November 27, 2010 4 Comments

Cliff is doing so much better today! He tried to crawl around on his bed a little last night and he also tried to sit up on his own! He is very weak and fatigues very quickly. This morning we went down to the therapy room for PT and he did ok.. He did not really want to participate, but we did get him to do a few things:

He rolled all over the therapy mat! And then we got him on his tummy! He was a little uncomfortable, but I think he just needs a adjust to his new legs and the way things feel now.

Then he sat on the edge of the mat. He is VERY uncomfortable sitting up… I am praying this gets better with time. It is still so difficult for us to see him struggle so hard.

Then we got him on the therapy bench and tried to get him to stand a little. His knees bend so easily. They tend to ‘buckle” when he stands, which we anticipated. The therapist said that Cliff would most likely need knee immobilizers to wear at night when he sleeps in order to stretch his hamstrings and keep his legs straight. They also reccomended we get a treadmill for our house so Cliff can practice walking and side stepping on it.

We encouraged Cliff to stand and he tired very hard! He needs a lot of assistance because he is so weak. But he tries his best, that’s all we ask of him!

Cliff also got to smear foam all over the mirror! He really liked this, but sitting on the bench is so difficult (or uncomfortable we aren’t sure which one) that he got frustrated. I think I am going to get this foam for him to stand and smear on the front glass door at home!

The second session was so horrible that we didn’t even get a chance to take pictures! Cliff screamed the whole time and he was so sleepy that he actually fell asleep on Ross’s shoulder while we tried to make him stand. We did get him to crawl a tiny bit on this hands and knees though! Ross and I have to do more PT with him on our own when he wakes up from his nap… We will see how that goes!

Thank you all so much for keeping Cliff in your prayers! Lifting him up to God during this difficult time is the only way we are making it! I can’t thank you all enough! Please keep Cliff in your prayers!

Oh yea! And he will be discharged tomorrow! Whooo Hoooo!

Seek the Lord and his strength

Seek his prescence continually!

-Psalms 105:4

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

Therapy Day!

November 26, 2010 1 Comment

Last night was pretty interesting. Cliff pulled out his “glove” (aka I.V.) and then said “daddy, will you help me put my glove back on?!” I rushed back up to the hospital and after speaking to the nurse, Ross and I decided that Cliff could take his meds by mouth and he would not be on the Phentenoyl (spelling?) anymore. We think that mediation was making him craaaaaazy… So now he is on Valium and Tylenol on an “as needed” basis! He seems to be much happier since he is off the major pain killers! We are so happy! Oh yea, then early this morning Cliff threw up twice… all over himself… it was soo nasty.. but I will spare you the details because I love you!

Today has been our best day by far!

The neurologist told us that Cliff is “caught up” to where he should be! We thought he may need to stay in the hospital an extra day or so since he was in the PICU for 48 hours, but he is doing so great off of the meds that they think he can be discharged on Sunday! Yay!

Cliff had his first physical therapy session at 9:00am. The Therapist came into his room and showed us how to safely list Cliff and put him in his stroller. We took him on a little stroll around the 12th floor and then he sat up in his bed (for the first time) for a while.

Harper came to see her big brother! She loves his hospital bracelet!

Then Cliff had his second session of PT at 1:00. We went to the therapy room for this session. The room is awesome (I’ll try to snap some pics tomorrow)! Cliff’s legs are pretty lose. He is still having muscle spasms so he is still wanting to draw his legs up and not let then go straight.

More Valium? Yes please!

Cliff sat on the bench but is so weak. It is hard to see him this weak, but we know that he will get stronger with time!

Then he stood a little! He REALLY tried to stand up! He was so proud but unsure of his new legs. I think it will take a little time for him to get used to his new legs. He is so weak that he could hardly hold his head up.

Cliff got a dose of Valium as soon as we got back from Therapy and then ate a great lunch! He is now watching “Gabba” and we are going to try to take a nap! Yay for sleep!

God is so great to us. We are so blessed. We are so thankful.

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

Let it SNOW!

November 26, 2010 1 Comment

Today has been quite eventful!

Cliff is feeling much better! He still has his ”moments.” But compared to the past two days, he seems much better. Here are some of the events that happened today:

It SNOWED!

Bye, Bye PICU!!!

Cliff was moved to the 12th Floor! Isn’t the view spectacular?! (And this is just a tiny bit of the view!)

Cliff LOVES the TV on the 12th floor! I’d say he is pretty relaxed up here (as long as no Doctors or Nurses come in the room!)!

Did I mention it SNOWED?!?

(Do those Christmas Balls look familiar? Cliff and I took a picture in front of them our first day here!)

Cliff even played ball with Daddy!

Harper got to visit her big brother! It felt so good to have our little family together on Thanksgiving!

And best of all, Cliff smiled a good bit today!

Cliff will begin Physical Therapy at 9:30am (CST) and then his second session is at 1:00pm (CST). Ross and I are pretty nervous about it. It just doesn’t seem that Cliff is ready to begin PT. I have faith in the Doctors, Nurses and Therapists and trust that they know what they are doing.

Dr. Park looked at Cliff’s legs tonight and said that they are looking good! The little movements in his feet and toes are a VERY good sign, but we will not REALLY see a huge difference until we begin PT! We are so thrilled! So far, So good! What a relief!

Please continue to pray for Cliff. This journey has just begun and he has a long way to go!

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

Looking Up!

November 25, 2010 1 Comment

After more meds and a decent nap, Cliff woke up for the first time since the operation and did NOT cry! He wanted to watch “Elderado” and he opened a little gift from us (Woody from Toy Story!). He sang a little and tried to dance with his arms. He even played with Mater a tiny bit too! We were so excited to see “our” Cliff! We asked him about his legs and he said they felt “Happy!” I had to fight back tears, I was so excited!

He still screams if a Nurse or Doctor comes into the room. Cliff is in the PICU and may move upstairs sometime this afternoon, depending on his pain level and tolerance. He still has moments where he is fussy, but is sooo much better than he was yesterday! We are so grateful!

Cliff also ate a little dinner last night:

He ate 1 bite of Grilled Cheese, 1 bite of french fries, and a tiny bite of a Chicken Nugget!

Oh yea and he took a sip juice:

This morning he seems to be so much better! He asked for E.V.E.R.Y. single toy we packed! So now he is in his bed playing a little and watching “Moose” (aka Nick Jr.) he is trying to dance and is eating a little breakfast too! He even tried to “stomp” his legs to a song!

We are waiting to speak with the Neurologists and Attending this morning. Cliff’s legs still seem to be spastic and are pulled up in the fetal position. We try to get him to put them out straight and he cries. We cannot tell if he is scared to move them or if he can’t. I am anxious to see what they think about Cliff’s legs. We pray that the surgery was successful in removing the spasticity from Cliff’s legs. I will be sure to update as soon as we speak to the Doctors.

We have so much to be Thankful for! God has and still is touching our lives in wonderful ways. We know that God is in control and we trust him deeply. Thank all of you to all of our Prayer Warriors out there! Please keep Cliff in your prayers as he recovers. God is amazing! Ross and I are watching a miracle right before our eyes! God is wonderful and we know that with him by our side, anything is possible!

Oh yea, HAPPY THANKSGIVING!!!

Some awesome volunteers are bringing a “home cooked” Thanksgiving dinner for the PICU parents! We have so much be thankful for today!

Today’s verse is a reminder to trust God, I mean REALLY trust God and his plan. This verse is so comforting to us and Cliff smiled as we read it to him this morning!

Trust in the Lord with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him,

and he will make straight your paths.

-Proverbs 3:5-6

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

hold me!

November 24, 2010 5 Comments

Cliff is in a lot of pain. He is having muscle spasms in his legs that even the pain meds can’t help. They have given him four different types of pain meds and nothing seems to ease the pain. He will sleep for about 10 minutes then will wake up and scream for about 45 minutes. This is the “cycle” he had been repeating since he woke up from surgery yesterday. He is still in the PICU and we have been told that they will most likely move us upstairs today!

Ross stayed with Cliff until about 5:00am, then we switched and he went to the hotel room to sleep. Ross is so amazing! I am so blessed to have him as my husband and the babies are to blessed to have him as their father.

Cliff is very scared that we will leave him. He constantly says “Hold me, mommy!” We are always having to remind him that we are here and that we are not going to leave him. This morning I finally crawled into bed with him and “held” him very carefully. He is so scared. Every time a nurse or Doctor comes in, he begins to scream again (it seems as soon as someone leave, another person is coming in…). I pray that God will fill Cliff with strength and the knowledge that he is not alone.

Ross and I never imagined it would be so hard to see Cliff in this pain. It breaks our hearts and we keep telling each other “I wish I could take the pain away.” I know this pain will soon be gone, but I hate that Cliff has to feel like this.

*Update: Cliff will stay in the PICU for another 24 hours and maybe longer than that depending on how he feels after upping the dosage of his meds. He screams if we try to move him at all, which the Dr. just told me was not normal…So at 1:00 (CST) the Attending is coming in and we will try to move Cliff a little… I am DREADING it because if you move his arm the slightest bit he screams in pain. We are still hopeful, but extremely scared for Cliff. I often question myself as to if this surgery was the right thing to do, but then I remind myself of all of the opportunities Cliff will have after he is healed up! And I also think about another little boy who is just like Cliff (same age too) who is doing GREAT now! I know that God is with Cliff, the Doctors and Nurses. God is in control.

Please continue to keep Cliff in your prayers.

Here is the Verse we are sharing with Cliff today:

The Lord is my light and my salvation

whom shall I fear?

The Lord is the stronghold of my life

of whom shall I be afraid?

-Psalms 27:1

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

"We’re going on an Adventure!"

November 23, 2010 3 Comments

This morning when Cliff woke up we told him that we were “going on an adventure!” He was very excited and he knew that today “Dr. Park will fix my legs!” Last night he said out of the blue “After Dr. Park fix my legs, my legs will be worms!” I have never said “worm” but I have said “noodles” so we were both surprised that Cliff made this association! Our “Adventure” began this morning walking over the crosswalk into the Children’s Hospital:

Then we went into the pre-op room room and the nurse took all Cliff’s vitals, which he did NOT like. Then it was time to give our last hugs and kisses before we took him to the OR.

(Sorry the next few pictures are sideways… for some reason I could not get them to rotate in Blogger…)

Ross and I fought back tears until Cliff was completely out of our sight because we did not want him to be anymore scared than he already was.

I did not want to let him go…

This was the hardest moment by far. Cliff cried and watched us as they walked away. It broke our hearts, but we know that he is in God’s hands now.

And now we wait…

We have received one phone call from the OR and the nurse said that Cliff was doing great! Dr. Park was actually in Cliff’s Spinal Cord and he was starting on the right side!

Call number two came in and the surgery went great! The nurse said that Dr. Park was closing Cliff up and that Cliff did perfect! It’s DONE, no turning back now! We are so thankful and are VERY anxious to see our sweet little Cliff!

Thank you Lord. Please continue to watch over Cliff and Dr. Park throughout this surgery and in the days to come.

Filed Under: Family, Selective Dorsal Rhizotomy, The Boy

A big Day with GREAT news!

November 23, 2010 3 Comments

Today was a very exciting day for us!

We met with THE Dr Park!

But first we watched a video about the SDR and actual footage of the procedure, which was pretty neat!

Then we met Joan, Dr. Park’s nurse, who has been awesome about answering any question we have had over the past few months!

It was so neat to finally put a face to the voices I have been speaking to!

Cliff was great while waiting.

He was so excited to meet Dr Park. Ross and Cliff played with puzzles while we waited.

Then Cliff and I were being very, very silly!

We had some good laughs and made some fun memories!

And then the moment came when we got to meet with Dr. Park! Cliff absolutely LOVED him! Dr. Park told us that Cliff has a “good chance of walking independently within the next year or two!” Then he told us that he expects Cliff to walk with his walker (without help from us) within the next six months! Yay! We were over the moon! When Dr. Park was explaining the surgery and recovery Cliff would say “exactly!” after every sentence and Dr. Park thought Cliff was so funny!

Cliff pretty much leaped into Dr. Park’s arms! It is as if he REALLY understands that Dr. Park is going to help him and Cliff seems to trust Dr. park (those of you who know Cliff know that he does NOT like most Doctors, especially new ones… so it was so comforting to see that he really liked Dr. Park!) When Dr. Park shook my hand today, I did not want to let go! I just wanted to hold the hands that God has blessed in such a huge way, but I think Dr. Park would have probably thought that was strange, so don’t worry, I let go within a normal amount of time! Those hands have allowed so many children to have a world of opportunities they normally would not have. Those hands have truly been blessed by our Lord. Those hands amaze me. And tomorrow, those hands will be changing Cliff’s life forever.

Cliff also had PT today, which was, ummmmm pretty much H-O-R-R-I-B-L-E! It was about 2 hours past nap time and he was just done… she got him to do everything they needed for the pre-op video, but he screamed the whole time! Ross and I were both horrified at his behavior, but hey, we all have our bad moments right?!

Cliff’s surgery will begin at 11:00am (central time). It will take about 4 hours from the time we take him to the OR doors until we get to see him again. Please say an extra prayer for him tomorrow! I know that God will be with Cliff and Dr. Park! Ross and I feel so blessed to have such a wonderful support system! Thank each and every one of you who have reached out to us during this time. We really appreciate your prayers!

Here is the Verse we will read to Cliff tonight, these are the words Cliff will hear right before he goes into the OR and this Verse will be the first thing Cliff will hear as soon as he wakes up from surgery:

Fear not, for I am with you

be not dismayed, for I am your God

I will strengthen you, I will help you,

I will uphold you with my righteous right hand.

-Isaiah 41:10

Filed Under: Famly, Selective Dorsal Rhizotomy, The Boy

we’re Heeeeere!

November 22, 2010 4 Comments

Today we flew out to St. Louis for Cliff”s surgery! Needless to say we are pretty exhausted. We are all filled with 5oo different emotions but most of all we feel so blessed to have this opportunity!

Cliff thought it was so neat that we were “higher than the clouds!”

This was also Harper’s first plane ride! She did great!… all we did the whole plane ride was nurse and sing “Jesus Loves Me!”… She was in heaven!

Here it is!!!

After we checked in and got a little bite to eat, we took a stroll around the city and then checked out The Children’s Hospital!

It is so magical! Cliff thought we were at the “There(aka the fair)!” The exterior is so “kid friendly,” I cannot wait to see what the inside looks like!

Oh yea and my favorite part, they have already decorated the whole hospital for Christmas! Yes Ma’am they sure have and I just LOVE it!

Tomorrow is a day filled with appointments and therapy evaluations. We are so very excited to meet the famous Dr. Park and hear what he thinks Cliff’s future will hold after his surgery, even though we know that only God REALLY knows what the future holds. We thank God for our safe travel today and pray that he will hold Cliff in his strong hands in the days to come.

Before we left, I printed out my favorite Bible Versus about strength and praise in fun colors and fonts to hang in Cliff’s hospital room. We will be reading these verses to Cliff during his recovery as a reminder that with God by his side, anything is possible! So, I will share one verse that we read to Cliff at the end of each post while we are here:

I can do all things through him who strengthens me.

-Philippians 4:13

Filed Under: Family, Selective Dorsal Rhizotomy

No Turning Back!

November 21, 2010 1 Comment

Today we fly out to St. Louis. Please say a little prayer for our little Cliff. He has a very long, tough road ahead of him. My posts may be at very random times in the days to come, but I will keep all of you updated! Thank you for keeping Cliff in your thoughts and prayers!

From today until December 1st my Blog will be all about Cliff, his surgery and recovery! Thank you for your support and understanding! DON’T worry though! I have some awesome tutorials and ideas waiting for you when we return home!

Filed Under: Uncategorized Tagged With: Uncategorized