Posted (Tina) in All Posts on June-16-2009

Ella had 3 therapy appointments today. Before OT started, she was having a great time with her laptop computer. Then, OT went fairly well and that is the only session where I was able to take pictures of her exercising. When PT arrived at 2pm, Ella did not want to work. She cried and melted down. Unfortunately, she did have one of her episodes again today where she briefly passed out. It took a bit longer than last week and the pass out moment was very brief, maybe for 1 second, but she still had it happen.

Speech therapy went pretty well too. The therapist wanted to observe Ella while watching one of her favorite videos, Baby Signing Time. She has been watching this series of videos since she was 6 months old and was released from the NICU in Florida. She absolutely loves them and gets so excited.

The therapist was helping to give me ideas to implement that will help Ella’s communication skills. Here are some examples: Before putting Baby Signing Time DVD in, help Ella gesture “baby signing time” in sign language. This will help to tell her what is coming next and learn how to request it. Stop the DVD during certain times to help increase Ella’s vocabulary. For example, stop when the “bird” is on the screen and help her sign “bird” and/or point to the bird on the screen. When done, have her sign “more” to turn the video back on. With other videos, show Ella the DVD before playing it. Later, she might be able to choose the one that she wants.

We spoke to Dr. Abman’s nurse today and reviewed Ella’s progress since the increase in medicines. There is still some concern that the episodes are occurring. Dr. Abman noted that her latest chest x-ray is consistent with the one in April, but that it is not a clear xray. It does seem like she might have fluid in her lungs. The nurse is going to double-check with cardiology tomorrow to get a full assessment of Ella’s SVC and whether the flow is the same or worse since her procedure on Feb 25, 2009. This way, we can either eliminate the SVC as playing a role or take the steps to investigate it further.

The other idea is that she simply may need more diuretic. Since the SVC procedure, we have not given Bumex, a really strong diuretic (before the procedure, she needed it about every 2 weeks). Then, 4 weeks after the procedure, we eliminated Captopril which helped increase the effectiveness of the diuretic. On top of it, she has gained 6-7 pounds since the SVC procedure, but we did not increase her diuretic. So, although the SVC procedure has given us more wiggle room with her fluid issues, it may not have resolved it completely and now, it has caught up and we are seeing symptoms of the fluid.

Dr. Abman is on his way to Europe to give some medical lectures, so it may be a few days before we get any clear direction on next steps. We’re just hoping that it doesn’t involve anything too invasive.

Tomorrow, Ella just has OT and PT. I’m really hoping that she enjoys her PT session. She has not tolerated the last few and I cannot figure out why. She loves her therapist and usually welcomes the time to play. It’s been strange.

I wanted to share a devotional excerpt that really spoke to me last night. It is from “Streams in the Desert” by LB Cowman, edited by Jim Reimann.

God has made me fruitful in the land of my suffering
-Genesis 41:52

A poet stands by the window watching a summer shower. It is a fierce downpour, beating and pounding the earth. But the poet, in his mind’s eye, sees more than a rain shower falling. He sees a myriad of lovely flowers raining down, soon breaking forth from the freshly watered earth, and filling it with their matchless beauty and fragrance. And so he sings:

It isn’t raining to me – it’s raining daffodils;
In every dripping drop I see wildflowers on the hills.
A cloud of gray engulfs the day and overwhelms the town;
It isn’t raining to me – it’s raining roses down.

Perhaps you are undergoing some trial as God’s child, and you are saying to Him, “O God, it is raining very hard on me tonight, and this test seems beyond my power to endure. Disappointments are pouring in, washing away and utterly defeating my chosen plans. My trembling heart is grieved and is cowering at the intensity of my suffering. Surely the rains of affliction are beating down upon my soul.”

Dear friend, you are completely mistaken. God is not raining rain on you – He is raining blessings. If you will only believe your Father’s Word, you will realize that springing up beneath the pounding rain are spiritual flowers. And they are more beautiful and fragrant than those that ever grew before in your stormless and suffering-free life.

You can see the rain, but can you also see the flowers? You are suffering through these tests, but know that God sees sweet flowers of faith springing up in your life beneath these very trials. You try to escape the pain, yet God sees tender compassion for other sufferers finding birth in your soul. Your heart winces at the pain of heavy grief, but God sees the sorrow deepening and enriching your life.

No, my friend, it is not raining afflictions on you. It is raining tenderness, love, compassion, patience and a thousand other flowers and fruits of the blessed Holy Spirit. And they are bringing to your life spiritual enrichment that all the prosperity and ease of this world could never produce in your innermost being.”

Fran on June 16th, 2009 at 9:21 pm #

Ella, you look precious as always in your pretty flower top. Wish you sweet rest tonight so that you have good sessions with your OT and PT tomorrow. Sleep well.

Joan and Steve Odell on June 17th, 2009 at 9:55 am #

Hoping the sessions go well today – Her hair is so beautiful!!! Miss Ella you are so pretty and so sweet. Thanks for sharing the ‘poem’. It is so very true – Prayers and hugs Steve and Joan

Joel Snyder on June 17th, 2009 at 12:12 pm #

Ella, It sounds like you had a good start and just ran out of gas. Well that happens sometimes and I am praying that you will go back to your steady progress schedule which always seems to work for you. Good luck with all your appointments and have a great day. Love,Grandpa!!!!!!!

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