Saturday, July 3: Update

UPS delivered pieces of our new reality today. After Claire used the wedge last week to lay on her stomach, I began ordering equipment for our home therapy sessions. Our wedges arrived today, one six inches high, the other eight. It was the first piece of equipment that was delivered.

As we begin to forecast what the future looks like for the near term months, we are making a list of the things we will need to maximize Claire’s recovery potential. We are eager to have Claire home at the appropriate time, and we know that when she is here we will be leading the majority of her therapy. In addition to our wedges we have ordered a new bed/crib, tumbling mat, weighted blanket and vibration snake. We expect the list to grow.

This planning helps us regain some feelings of control. We have a lot of uncertainty about Claire’s recovery potential, but we know that we can control the environment and effort put toward it. The researching, buying and organizing is cathartic for me.

Claire’s exhibited improvement today was more therapeutic than my shopping list. Tiffany and I took Claire for a walk outside and it was her best outing to date. She showed very little agitation and seemed to enjoy the sun on her skin. We managed to catch the one hour in the metroplex when it was not raining: while humid, the walk was nice and temperate.

Claire’s walk followed a long day of rest. She slept very well last night and woke up only once for an hour. She napped through the early morning, only waking to confirm the resounding German victory over Argentina. The rest did her good.

We made a slight change to Claire’s feeding schedule today. Claire has been eating via G-tube every four hours with each feed taking two hours to cycle. This has left us with few hours to do therapy, get baths and take walks. We experimented with accelerated feeds so that Claire only takes an hour to eat instead of two. She did great. No reflux. No aggravated stomach issues. We will keep the two hour cycle through the night, but if looks like we’ll be able to reclaim some working time during the day.

We hope everyone is enjoying their weekend. Thank you for your prayers and support. Happy 4th!

Advertisements

19 thoughts on “Saturday, July 3: Update”

  1. I have been following your journey from afar. Three years ago, my now 10 year old son, suffered a traumatic brain injury. I just wanted to compliment you guys on taking the pro-active approach and being prepared! I wish we would have done more of that. One thing you may want to check out if you plan on doing a lot of the therapy is http://www.nacd.org We have used their home programs for sometime, and I feel it has made a huge difference in my son. Never give up….my son was in a complete coma for four months, no movement, nothing. He still has a ways to go, but he continues to make improvements and has far surpassed all expectations the doctors had for him. God bless you all!

  2. I do not know you but stumbled across this site, I just want you to know that I am praying for your family and beautiful daughter claire, god bless you

  3. We love you all and continue to carry you in our prayers. Have a great 4th of July

    Your family in Seattle

  4. I look so forward to each day’s update. This journey with you has been an amazing thing and it has touched my life and I know the lives of everyone following you. It’s a unique bond….makes my eyes water. My laptop crashed Tuesday morning and I was without email/internet until yesterday (Friday). All I was concerned about was I have to get access, I have to know what’s going on with Claire today and to hear how Tyler, Tiffany and the girls are doing. I was surprised how much not being able to read the updates for those few days affected me. I’m on this journey with you for the long haul as it is definitely having a positive affect on my life and putting things into perspective of what is important and what is not. And it also blesses me with the privelege and honor to pray for Claire and the family. So, I guess your stuck with me! We may never meet on earth but I’ll see you all in Heaven one day. Thanks for your vulnerablity and access into your lives. Jesus loves you. xoxoxoxo

  5. Great news about Claire’s outside journey and feeding. We will be with you in spirit. You’re great parents. God Bless!

  6. I’m glad that little beautiful Claire improves slowly everyday !!! Glad to see she is enjoying getting outside in the fresh air, Bigs hugs and kisses to your beautiful Claire ,, Praying for you every night..
    Stay Strong…

    Ellen

  7. We can see the hand of God working in Claire’s life as she slowly improves and you make plans to bring her home and continue her therapy. Praying God will continue to strengthen and encourage you for this journey He has set you on.

  8. Can we help you with the equipment? We can pray and we can support you through these little words sending you praise, encouragement, and hugs… What can we do to help you financially? Praying that today is better than yesterday and that Claire gets the sunshine she so loves to feel today!

  9. So glad for every peice of good news and improvement on the long and winding road Claire is on. She is in our prayers every day. We are working in the Adventure Zone this evening, and it just isn’t the same without Claire–we look forward to seeing her at church again someday. Love you guys!

  10. Great news about the feeding! One more step the right direction. Still praying for you and your family. Happy 4th!

    Amy

  11. I have been keeping up with everything you post and I am very glad to see in the comments that you have so much support during this time, espcially the support you have from those who realry know what your going through. Love and prayers always.
    Aunt Denise

  12. My prayers continue every day for Claire and your whole family.
    It helps so much to have positive things to do and plan for when she is home again. God Bless.

  13. Happy 4th of July Martin family! You guys are doing great helping Claire get better! You rock! Take care and we will continue to keep you in our thoughts and prayers

  14. H:i, Again I will ask the question. What qabout useing the Hyperbaric chamber to saturate all her body cells with oxigen? This worked with a stroke victim who had many problems like Clair. You are in my prayers! Love you all. Carroll

  15. Tyler and Tiffany,

    You don’t know me, but I go to church with your sister/sister-in-law, Michelle. I haven’t posted before; I was hesitant not knowing what to say and not wanting to say the wrong thing, but today of all days, I feel compelled to thank you for sharing your heart-wrenching story with us all. I have three girls, the youngest is two, and she jumps into the pool with no fear whatsover. Your experience and fears are close to my heart.

    You and your entire family are an inspiration to us all. I cannot imagine going through what you have, but I can only hope I would have even half the courage and strength you have shown through this.

    I look forward to your updates (even though they often make me cry) and will continue to pray for little Claire and the rest of you. You are in my heart, my thoughts, and my prayers.

    I hope you are able to find some peace and joy on this special day.

    God Bless.

    Leea DiPentino

  16. Hi,

    I’m very touched with your story as I have a little daughter too. My daughter was born at Las Colinas Medical Center where Claire first received medical attention. My daughter has been at Medical City 3 times. Her Pediatric Surgeon for her g-tube placement was Dr K that works with Dr L (Claire’s Dr) and Dr L is now her Pediatric Surgeon. My daughter had some therapies at Our Baylor’s Children House in a satellite facility. I have been following some blogs from other kids like Claire.

    Just my two cents. Have you discussed with your Drs. continuous night time feedings for Claire?. Some GI Drs. disagree with this saying that kids will not learn to eat if they are on continuous feedings but this is wrong, they will even if they are 24/7 on continuous g-tube feedings. Continuous feedings at least during night time would mean more sleeping for all of you. My daughter is g-tube feed and we started continuous night time feedings a year ago after 3 years on scheduled pump feedings, we have a whole support community of parents that have tried this with their g-tube kids. The reason my daughter has a g-tube is diferent that yours but at least you can check this out.

    Another observation that I have is that reflux can be silent, no externals sings of it but still in there. My daughter had an endoscopy 6 months ago while under for another procedure and it was discovered that she indeed has had reflux, which I suspected since she was born but as no external signs Drs refused to treat it earlier.

    I’ll be happy to share general maintenance of g-tube equipment and supplies that I have learn over the years as no formal training was given to us when she was discharged, just in case you are sometime interested.

    I will keep you in my thoughs,

    Beatriz

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s