We are excited to announce that we have a new nephew! Mark's brother and sister in law, Michael and Jessica, had a baby boy late Tuesday night. His name is Alex Jay and he and his mom and doing well. On the TenHaken side there were three baby boy cousins born right in a row; Max in November,and Charlie and Alex in February. It will be fun to watch these boys grow up together!
Charlie had a doctor's appointment yesterday and his temperature was still a little low. I have been checking it all week and it usually stays stable, but I gave him a quick bath before the appointment, so maybe that caused it to drop a little. He did gain weight; he is now up to 6 lbs 4.5 oz. Everything else looks good, so the doctor said she is not that worried about his temp. We are just supposed to keep him bundled up and she thinks he will be fine. So, that is good news. Hopefully he will keep gaining weight and that will help him.
The last couple of days Ruby had the most seizures she has ever had. This has been very hard for me to accept. It is so frustrating because we have fought these seizures for almost five months now and we really aren't any closer to stopping them. I have called the neurologist and the dietitian a couple times in the last week and honestly I think they are not sure what to tell me anymore. We increased Ruby's meds last Friday and it seems like the seizures got significantly worse since then. So, this morning I went back to her original dose to see if that helps. I just don't understand why we can't make some progress with her. I feel like everyday that goes by without seizure control is another day of lost development. Ruby is such a blessing to us, but it is very hard to think of where she might be in a couple of years if we can't get on top of this. Thankfully, she still isn't throwing up and she smiled a lot yesterday, despite her seizures; it is amazing what an encouragement a smile can be.
I know God is in control and I know He has a plan, but I am having a hard time understanding what that plan is in all of this. I am trying to trust Him and to pray for feet to walk this path... but it's tough. I really hope we see some progress soon.
6 comments:
"for i know the plans i have for you," declares the lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."
you can get through this kelli....i know you and that you are a VERY strong person! i look up to you for your faith, because even through all of this you are still depending fully on God.
thanks for everything....i know that sounds funny but it is true. i just wanted you to know that i am making profession of faith in a few weeks....and that i wouldn't even be here today if it weren't for you. THANK YOU!
stay strong...i am praying. :)
Kelli... there are just no words I can even think of to say to you. Ruby is on our hearts daily. We keep her picture pinned up on our china cabinet and we are doing all that we can on her behalf with prayer. It IS hard to understand God's plan in all of this. But I pray He uses Ruby for His glory. Hugs to you friend!
Oh Kelli :( ((HUGS))!!!! I cannot begin to imagine how you are feeling right now!! It has to be so difficult to watch your child, this little being you love, struggle and not be able to do anything!! Praying for you!!
What alot you guys have been through in the last year, and thankfully as you said God has been in control of every detail. We just wish we could see the big picture sometimes. We are praying for you all and that God would keep you strong- you guys have been an amazing testimony of faith in all you have been through. Thanks for sharing your heart. Love Michelle
I am just throwing this suggestion out to you. Have you looked at any yahoogroups on seizures? I know that I learn alot from other moms with kids who have the same disabilities that mine have.
I hope that she gets seizure free very very soon and that little Charlie keeps his temp. up where it needs to be. Sincerely, Robin
Robin- Thanks for the suggestion. I am a part of the infantile spasms and the ketogenic diet yahoo groups. They are very helpful. It is nice to gain info from people who are dealing with the same thing.
Kelli
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