Tuesday Morning

Jack had a good day Monday. He had a good speech therapy. He didn't like the electrode therapy too much, it doesn't hurt, just feels weird on his throat. The therapist distracted him and he was able to think about the blueberry sucker he had rather than the sensations on his neck. He had many good swallows with the vitastim on. He even said "yea" and "doo" as in scooby. The therapist said that the words were part of his healing not from the use of the vitastim. He had a bit of a meltdown in occupational therapy, didn't like the activity. It was stretching his neck muscles by having him on all fours throwing some stuffed toys into a basketball hoop looking thing. He had to lift his head for this. It still hurts quite a bit and is uncomfortable for him to move his neck because of the surgery. Physical therapy went well, throwing a ball, kicking a ball, and walking stairwells.
He is also laughing alot (not during therapies) now. His sense of humor is still with him. He is full of little jokes.
Hope to email soon with the newest progress.
Love, Tammy

5/17/2005 2:52 AM


I have also forgotten to add that Jack's diagnosis right now is called Posterior Fossa Syndrome. You can log into google and punch in those words and it will tell you a little about what he is going through. Not all kids that have a tumor removed move on to this after surgery, but some do. Atleast we know a little about it from this information and feel reassured that with time all this will work itself out. I love having information, and not just guessing about why certain things are happening with him. Thought some of you might be interested in that.
Tammy

5/17/2005 3:00 AM

Comments

Anonymous said…
The name (I've already Googled it) is "Posterior Fossa Syndrome" named after the area of the brain where the tumor originates. I am so glad for you that they have identified this and know how to offset the negative reactions after surgery.
Anonymous said…
Tammy and Rob, Our family has been out of town the last few days so I feel like I've been out of touch with how you are doing. It is good to get back and read the progress that you are making. Rob, it was great to see you at church last Wed. night. I can only imagine how much you would like to be at two places at the same time. May God give you peace as each of you walks through this new territory. I know that you will choose the right places to be at the right times. It sure will be good to have Tammy and Jack back home! Then no more separation stuff! I pray for Jack to continue to make progress in his recovery. Tammy, it sounds like y'all have new scenery and a whole new routine with the therapy. I know that therapy is hard even for adults, so I can only imagine for a kid. It's harder for them to understand the pain now so they can recuperate motion later. I'll be praying for Jack's endurance. Take care!!
Frances
Anonymous said…
Sara Anderson, Beth Glen and Mary Arnold, please forgive me for not thanking you in my blog yesterday. My thoughts are still scattered. Sara, thank you for bringing us groceries when DJ was sick. Beth and Mary, thank you for calling us and offering your help and support. I know there are SO MANY more of you that I need to thank for your kindness. I felt comforted and loved by you wonderful people.

Rob, Tammy, DJ, Sophie, Jack, Mom and Tom, I miss you all so much. I miss kissing the kids in bed at night and waking their sweet faces in the morning. I'm still amazed at how good, kind and helpful they were! We had fun together. If you need me back it will only take a call! I love you.
Tamara
Anonymous said…
Dear Tammy,
Since you like Mother Theresea; I saw this quote and thought of you.
"Faithfulness to the little things will help us grow in love. We have all been given a lighted lamp and it is for us to keep it burning.

We can keep it burning only if we keep on pouring oil inside.

The oil comes from our acts of love.

When someone tells me that the sisters have not started doing any big work, that they are quietly doing small things, I say that even if they helped one person, that was enough. Jesus would have died for one person, for one sinner."
I thought of the abundance of "small things" that you do each day for Jack; that named on their own might not seem like much to some : fluffing pillows, kisses, each step of therapy, considering his feelings so that you would eat elsewhere; "small things" by the standard of the world , yet so big to our Father. You, with each "small thing", build a big future for Jack and a growing testimony to the greatness of our God. Truly your lamp is both lighted and burning brightly.
Love,
Dave, Karise, Keely & Kinlie

Father,
Praise you for the encouragement of the saints who came before us. And we know that this great cloud of witnesses continues to praise you now. For you are great and Holy, worthy of our praise. Thank you for your boundless love for your children.Thank you for being our Father.
Renew the supply of oil for Tammy's lamp. Give her abundance of strength beyond measure. When it is the hardest, pour out your comfort that she feels it from the top of her head to the soles of her feet. She is faithful in the little things, give her much reward and blessing, Father. Bless Rob, DJ, Jack, and Sophie. When we doubt and wonder why, God, hold our hand. When we are scared and lonely and just are sad, wrap your arms around us. Thank you for not leaving us , even when we doubt what you are doing. Thank you for blessing us with your miracles, even in our unbelief. Thank you for increasing our faith, that we may appreciate you more. We ask for the continued healing of Jack. Please protect him from all harm. Touch him with your Holy Healing. Cure him completely. Bless him fully. We love him. He is so dear to us. Please watch over this boy. You have a boy of your own, you know how it is. You are our hope in this struggle. Thank you, Father. We love you.
Amen.
Anonymous said…
Tammy and Rob, We at the office have been following Jack's progress with damp eyes and tissues in hand. We continue to pray for you and have involved our respective church communities to also pray for 'our' precious Jack. I'm especially thankful that Jack has progressed so well under the care of the Drs. at Children's. Thank you for sharing all your experiences so freely. I feel blessed in having been given the honor to be your children's pedi. You remain in my prayers; may you draw continued strength from the Father.
Vera G
Anonymous said…
Wednesday morning -
Today is a new day!
Yesterday was hard for Jack I think that he was just real tired so his therapies were not very productive.
We also have our care conference today where all the therapists and the facilities dr.s come together and talk about Jack and his progress and future goals. I will look forward to going to that.
Jack seems to be in a good humor today and is happy right now. Pray for continued happiness and for endurance during his therapies so he can continue to progress at this awesome rate.
Speech is our last therapy of the day, and the therapy he needs the most work with, he is pretty tired by 3pm so I am hoping that next week they might be able to get us into a morning slot. Don't know if it is possible, but let's pray for God to make that happen.
Love, Tammy and Jack
Anonymous said…
Tammy says -
Thanks for all your enteries in the blog. They continue to give me encouragement and a burst of energy whenever I read your posts.
I have just come from Jack's care conference and Dr. McDonald, (Dr. Mack as he is known around here) is very encouraged and feels great about Jack's recovery. He again said that Jack is leaps and bounds (thank you Father) ahead of where most are at this point. Normally we would be here for atleast 6 weeks, and he didn't change the paperwork to make that a shorter time as of yet, but that he feels that it wont be that long. He said that their are 2 things that need to be taken care of before we can go home, safety - making sure Jack can walk strongly so he doesn't have any falls, he is just about there already and secondly that he can take in his own nutrition, and swallow properly. The speech is going to come within all that I think, but it is not a reason for us to stay here any extra time, we can do outpatient therapy in Abilene for continued help in that area. So praise God, I think unofficially he was expecting about 4 weeks longer here, but we could change that at anytime that Jack would master above mentioned. Thanks for your prayers because they are working! God has given us a recovery full of miracles.
Tammy
Anonymous said…
OK, I have one more person to thank (did I mention before that my thoughts were still a little scattered?) Evy Greenley, thank you SO MUCH for bringing us groceries when DJ was sick. Especially for the ice cream (Blue Bell is my favorite)!!!

And Jack, we will be packing our bags SOON to come see you in Abilene!

Love, Tamara

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