More to update today. We had eye appointments this morning for Christopher, Joshua and Eliana. We have been visiting this eye doctor for 10 years. She commented that she thought this was the longest we'd gone without seeing each other - 6 months. We have been there a lot over the last decade!
Christopher got fitted for contacts. He tried them last summer and couldn't get them to work for him. He has done much better with them today. It's amazing to me how different he looks without his glasses. I think he is pretty excited about them. He bought a pair of sunglasses tonight and commented that they were his first pair. I took a photo of him and will try to download it sometime this week-end.
Joshua didn't do so well on his eye exam. He has actually lost some of the vision in one of his eyes. :-( He is nearing the age when corrections won't be possible as the eye stops growing around age 8. We are supposed to do more patching. We haven't been as consistant as we should have been the last 6 months and really need to be diligent about it now!
Eliana had to get drops which she was not happy about. I told the doctor that I wanted to hear that Eliana did not need glasses. She said, "Well I can say that to you". (This was before examining her.) They thought she looked good in terms of being equal in both eyes and tracking. Eliana wasn't the most cooperative by the time it came to be examined. It took me holding her and the doctor prying open her eyes to get a peek at them. Eliana is a little far-sighted, but does not need glasses. I asked if she would definitely need them and the doctor wasn't sure. She said that Eliana might grow out of it. Oh, that is my hope and prayer!
I feel like this is yet one more time that we are going to be in limbo ... waiting. There has been a lot of unknowns ... wait and see ... wait until ... wait. Is this my test? Learning patience while waiting? I think I'm doing better. I've been surprised at times that I was alright with the waiting. In all of this, we have had no control and so in some ways that made it a little easier to just rest in God's perfect timing ... and wait. At other times though it has been hard. Going into the eye appointment I was hoping and even expecting to hear something one way or another about Eliana needing glasses. I wasn't expecting this. It's alright though. I'd rather hear this than to hear right now that she needs glasses.
Physical therapy went well even though Eliana was very tired. She had a hard time napping today. It's fun to watch her learning and doing new things. It's also really fun to see her therapist get excited about the things that she is doing. It gives me a fresh perspective on her skills and accomplishments that I really enjoy! I am thankful for this encouragment - and that too of a dear friend that writes often to cheer me on and to applaud each step of progress that Eliana makes.
I talked with someone at the Duke Development office today. She was very excited about what Rebecca has done and is looking forward to making a "big deal" out of her donation. I'm excited too - and proud of what she has accomplished. We decided to wait until she was a little closer to her goal of $5000 and then we would start setting up a time to formally give the money. Rebecca has been working diligently this week to build up her inventory again. Additionally, several friends have written today about Rebecca's bracelets offering help or wanting to buy a bracelet. I continue to be thankful for the response to her efforts.
Tonight Roger's sister and family have arrived. We were very excited to see them and the children stayed up late to welcome them here! It has been a long time and we are looking forward to getting to know each other again and having fun too!
Tomorrow we will be meeting with the surgeon to find out more information about the G-tube. I appreciate your prayers for wisdom in knowing questions to ask and for any decisions that must be made. I will update as I am able.
With love,
Leslie
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Leslie,
ReplyDeleteI am so happy that Eliana does not need glasses at this time. Connor is also slightly far sighted but has not needed glasses yet and I am very thankful for that! I hope Christopher will be successful in his endeavor to wear contacts. I never would be able to. I can't even keep my eye open for a glaucoma test when I'm "supposedly" numb and I rub my eyes alot because of allergies. My husband tried to get them a couple of years ago but he has such long eyelashes he could never get them in right. Somehow it isn't fair that my husband gets gorgeous long eyelashes and I get little stubby ones. LOL!
I just love reading about Eliana. I'll be thinking of you as you head to the surgeon.
We are heading up to Maine today to pick up Becca (our oldest) who has been at Christian Youth in Action camp for the last 10 days). It's at least a 5 hour drive (I'm expecting 6 or so because of traffic). There will be a short ceremony at 7pm and then we are driving back home. It is going to be a LONG day!
Rebecca's bracelets are so adorable. She does nice work. I think what she is doing is wonderful.
I hope you have a really nice visit with your company and a fabulous weekend!
Love, Karen
Leslie,
ReplyDeleteWe were told that it is normal for babies to be a slight bit far sighted and that they grow out of it. Since children with DS tend do develop more slowly, perhaps their vision also takes a bit longer to reach its full development. ((For example, Justin did not get his first tooth until he was 16 mos!)) Justin is due to have his eyes rechecked. When we get around to making an appointment, it will be interesting to see if his eyes have changed any in a year. My husband is severely nearsighted; I'm slightly nearsighted. So far, only our 10 yr. old seems to take after his dad. A couple of the others are slightly nearsighted. It is strange that neither you nor Roger wear glasses, yet every one of the boys have had vision problems! And that their vision problems started so young! I predict that Eliana's vision is going to be fine.
You said you wouldn't be surprised if they do the swallow study tomorrow. Well, you certainly can request that they do it. With all that you have been through and all that Eliana has been through, you have a right to know what is going on! And this study is the one last "leaf that has not yet been turned over"... perhaps the missing piece of the puzzle! Don't leave the hospital without it!
GOD's BEST!
Love, Anna
Karen & Anna - Faithful encouragers - thank you!
ReplyDeleteKaren - I hope your trip was a great one! I know you are glad to have Becca home.
Anna - Excellent point about the slower development. It is definitely something to consider. Thankfully she won't have to be seen again for 6 months. I'm looking forward to some time with nothing on her face. Thank you for the encouragment about her vision. It is my hope that she won't have to contend with glasses - but if she does, we have walked this road before. :-)
We have scheduled the swallow study for next week. I'm curious to see what it shows. I'll be surprised if it shows any problems though. I think that all of our problems stem from the NG and other intrusions. We'll see - or maybe we won't - but either way I'm looking forward to getting rid of this NG.