So yesterday I was bound and determined to work out at the gym. I was so incredibly stressed out with what’s going on with Cole that I thought a workout would be good for me. After all it’s been months since I last went to the gym and I did have a goal of losing 16 lbs by December. December is three weeks away and I’ve still got 16lbs to go. Anyways, getting into the gym has always been my difficulty with working out. The logistics of opening the outer doors while carrying a child and pushing a double stroller just seemed too difficult to bother going. But I went yesterday and made it inside. Yippee!! I was feeling so proud of myself. While I was spending precious moments of my workout trying to figure out how to use Eric’s IPod the manager of the nursery at the gym came out to get me and told me I had to leave with the kids because of Drew’s rash. Huh? I explained to her that he’s had it forever and it’s just a teething rash. It’s policy and I had to leave the gym, the only workout had was loading and unloading kids out of the car twice in a 15 minute period.
I was telling one of our therapists this sad tale and she asked why they were undressing Drew in the gym in the first place. I told her they didn’t, his shirt just rode up a bit and it’s all over his chest. She took a look at it and said it looked pretty bad and I should get him to the peed. Our awesome peed office got him in yesterday and it turns out it’s not just a teething rash, well, kinda, but it turned into a possible bacterial infection. Don’t freak out. It’s not MRSA. But we still are prescribed an antibacterial cream and heavy duty steroid ointment to clear it up. So I guess getting bounced out of the gym day care was a good thing after all.
This whole thing with Cole has left me completely dismantled. I just didn’t see it coming and as Eric said in his previous post, it’s like we got overconfident that Paige and Cole were going to come out of their prematurity relatively unscathed. We still are incredibly lucky and always will be…it’s just scary when I hear words like Legally Blind. With Paige’s prescription the doctors were saying she might not be able to drive a car (they have since said she probably will be able to), but now with Cole’s prescription twice that of Paige’s…how likely will he be to drive? Is he going to be able to attend public school? The same issues I had with Paige are resurfacing. At least this time I’ve already accepted the worst with Paige so now I just need to apply that same acceptance to Cole. The glaucoma scare is getting to me too. Supposedly the doctor’s office is going to coordinate with Children’s hospital to get us an OR time and call me back. With Thanksgiving coming, I’m sure they are not scheduling as many surgeries as normal which bothers me. I called yesterday just to see if they could give me a date. I knew they wouldn’t be able to but I feel so helpless and scared I thought it was worth a shot. I think their exact words were “ma’am did we tell you we’d call you with a date?”, well yeah but, “then ma’am we’ll call you as soon as we have a date”, well yeah but did you know they are saying possible glaucoma?? After reading more on glaucoma on the scary internet, I have so many more questions for the doctor too. I just need this glaucoma check soon before I go crazy with the “what if’’s” and we can move forward with whatever comes at us.
Another thought: we always kind of attributed Paige’s personality quirks with the possibility of her vision impairment. It could still be that she has more anxiety due to not seeing well…but now that Cole’s vision is twice as bad as Paige’s….why is he so calm and pleasant?
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Tobie, Hugs from all of us. I know it’s hard to deal with all of this but you guys have jumped so many hurdles already. Just keep it up and everything will be ok. If you need something let us know.
Shal - Got any spare eyes?
Crapola Tobie. I got upset just reading your post. It’s the daily things we try to do with bad news on our minds that become so difficult. I’m so sorry you’re having to swallow this about Cole, but just like the initial news of Paige and her vision problems, things could look better for Cole very soon (no pun intended).
I sure hope the beeotch at the Children’s Hospital calls you back very soon with a date so that you can at least breathe, knowing there is something in the works. I’ll be thinking of you and the fam.
Eric- I’ll find you some. Blue or Brown??
Shal - How about one of each?
All those damn rumours about preemie issues disappearing is so misleading for all of the preemie parents out there optomistic enough to believe it. I hope you find out soon about an or date…..be that pissed off parent and keep on calling - Here In canada the squeeky wheel still gets the OR date.
I’m so sorry to hear that P&C are having such vision problems. I know that it is difficult as parents to hear these things. I cannot even imagine. I hope they are able to help them with their vision. I’m also sorry to hear about Drew’s rash, but glad you were able to get into the peed!
Hugs & Prayers!
I’ve read your blog for a long time…so you may not know me, but I’m so sorry to hear about these issues with Paige and Cole. I also had preemie twins(1 surviving, 1 deceased) and we struggle with prematurity issues as well. My child still hasn’t hit the weight chart even though she is over 2 years old and is so small and petite. So, my prematurity issues aren’t as serious, but my heart goes out to you both. I wish you all the best with Paige and Cole!
Shal, if you go shopping, I hear this is THE place to go…
http://www.brmovie.com/Profiles/BR_Char_Chew.htm
Tobie, about that last sentence, every kid is different, even ones born at the same time.
More than anything right now I just want to go out there and give you both giant hugs.
FWIW, Happy Thanksgiving to all, and to all, a crammed gut.
Sorry, one more thought…any chance the infection can spread to the other kiddies?
nope
You don’t know me but I have been following your family story from the start. I love to hear stories about the kids. I am so sorry to hear about Cole & Paige. It seems like preemie issues just never end. I have two preemie boys who are now young adults. A 26 weeker who is now in College and a 25 weeker who is going to stay in High School until he is 21 but officially graduated last June. My second son has had many many issues. He had the same type of eye trouble as Paige. We had the surgery and had great results. His head tilt was pretty bad (he had to look almost side ways to stop his eyes from moving) and now his eyes only shake when he is tired or isn’t wearing his glasses. He is amazing and has gone though so much. I have attched a link to a video I made of him. I think it will help you and give you encouragement.
http://www.onetruemedia.com/shared?p=2b83561549d03ebd671594&skin_id=1604&utm_source=otm&utm_medium=text_url
I will keep both Cole & Paige in my prayers!