Please, somebody get me off the roller coaster. I don’t want to ride it anymore! It’s not fun! So many ups and downs (this post is more up though, so relax)!
So we had our second opinion retinal appointment for Paige today. The prognosis is much better than the last doctor. This doctor’s opinion is much more aligned with our pediatric opthamologist’s initial observation. Paige’s right eye does have issues with scaring and some traction. Right now he doesn’t recommend surgery. We are going to follow it for the next six months (weekly appointments for the time being), but he says if it stays the same, then she will just have normal vision issues that can hopefully be corrected with glasses. If the scaring and traction do get worse, then we can talk about surgery then. I cannot tell you how much better we feel after this appointment. That other doctor had us writing off Paige’s sight for good. While we aren’t out of the woods yet, she has a much more positive outcome then negative one at this time. There is a good chance Paige will develop a lazy eye as well. The doctor told us that most people who have a lazy eyes, do not have the correct neural pathways to operate that eye, and the eye looks anatomically correct. That’s so weird. He said there is a window of time where the brain and eye work together to figure things out, if you do not try to correct that behavior during that window, most of the time you will be SOL. So I’m sure we are going to work with some people to make sure that doesn’t happen.
We also had a peed appointment today. We think Paige’s behavior is somehow related to her clogged tear ducts (with a touch of colic of course). I don’t think we have mentioned that before. It’s a common issue in many babies (full-term even!). We are going to give her some new antibiotics for her eyes, so hopefully she won’t want to rub anymore. Both kids right now have crazy scratches all over their faces. Their nails grow back so quick (just like Homer, weird). Cole had some blood work up done. He might be anemic. Well find out soon. He also lost weight for the first time. All the diuretics we have given him has probably brought him down to his true non-fluid-retaining weight. He is now a full pound behind Paige, hanging in there at 9 pounds 12 ounces. We are going to start keeping track of his daily input to make sure he is getting the right number of calories each day. After a week, we’ll meet with the doctor again, if Cole isn’t hitting his targets, we will talk about supplementing his diet (steroids, supplements, diuretics, this kid is a body building machine!).
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I am so glad to hear that Paige’’s appt.went well today. It is great that you have foudn a dr. you can trust. I hope some of your worries are relieved at least a little bit for now.
This is just a thought for you. When our babies were born is was suggested that we create spreadsheet to keep track of everythign they were eating and pooping. Well, I have no clue how to make a spreadsheet so I just have a three-ring binder and hand write their info. The binder is divided into three sections (one for each baby). It has five columns. The first column is TIME (when they ate), then AMOUNT (how much in their bottle), OUTPUT (poops), SOLIDS (So I know what they have tried), and then MEDICATIONS. I thas come in very handy especially when the pediatrician asks what they are eating now.
Good Luck
I’m so thankful for the ups!
I know that the roller coaster is so old by now… and you may NEVER AGAIN want to go to an amusement park - but kudos to you for going with your gut and finding a new doc!!!
Not sure what they’ll do for Cole (and anemia), but both our girls are on iron supplements already.
I do think it’s interesting how the smaller of the 2 can coerce doctors into doing most anything… Not only is Lessa already on rice cereal (in her bottles), but now also on fruit juice. Yesterday she was scrutinizing the candy in the checkout lane a little too closely, and I told her that we just had to put our foot down somewhere, and there was NO WAY that she would be getting chocolate anytime soon!!!
Yay for good news! Have you checked out Trixie Tracker?
Angels do surround all of you…keep your faith and spirits up…all will be well in the world of the Kaufman household soon..! You’re strength and love for your children are phenomenal…and God blesses you with every passing day!
With Love,
Lorrie Sweet
Eric, Tobie, Paige and Cole:
We are crossing our fingers that the prognosis will hold true, and that Paige’s eyesight will be much better than originally anticipated! We think of you often, and we are sending good thoughts your way. We can relate all too well with the “roller coaster.” Tell Cole to watch out, pretty soon Paige will be beating up on him!
Sarah, Scott and Cooper Furlough