Well…after a brief hiatus…I’m back, and I have lots to report. Aren’t you lucky? This could get long.
Oh, he also fed animals in the petting zoo and gave money to a monkey in exchange for a post card. You know how sometimes you use a sentence that you never thought you’d hear yourself say? It happened to me that night when I said, “Here Reed. Do you want to give this money to the monkey?” I thought to myself, what am I saying? We also hit the little circus that they had there…it was pretty cute. Reed was in awe.
On his actual birthday, we all got up and went to Chick-Fil-A for breakfast. After we ate, Reed and Gaines played on the play equipment and Beau and I smiled when we heard Reed say to Gaines “Come here little buddy”. Gaines was all up in that play equipment right behind Reed but he wouldn’t do the slide. Kind of strange for our little daredevil.
We also met with pulmonology that same day…and of course, Gaines had a cold. Might have had a little something to do with the hay on the hayride at the pumpkin patch but we cannot be sure so no one put me up for mother of the year just yet. Because of this cold, they couldn’t really see how well that I think he is doing but agreed that he seemed to be doing great. He has outgrown one diuretic and is very close on the other so we’ll probably lose those meds after the next appt in January. Blue Cross probably has that date circled on their calendar.
He’d gained some weight but not as much as I’d really like so we are working on that. They did tell me that once Gaines was completely over this cold, we could try little periods of time off of oxygen. Starting with one hour and working our way up to 3 hours twice a day. Now, before we all breakout into song, I am almost certain that they do not think Gaines is ready to handle this and they only through me this bone because I kind of teared up over being so tired of the oxygen at the appointment.
The nurse practitioner was telling me that we’d lose meds first and then oxygen, especially this time of year and I told her that the doctor told me we could do oxygen first. She asked if there was any particular reason I wanted to do that and I just flat out told her, “Well, honestly, having a baby on oxygen kind of sucks”. I don’t normally talk to medical personnel that way but are you kidding me? Why? She’s a very nice lady and didn’t mean to upset me at all and I know that she empathizes but when I teared up and she said, “I understand…”, I said, “No you don’t…unless you’ve had a child on oxygen, you do not understand”. We deal with it and are used to it and answer strangers questions and untangle Gaines 895 times a day and we manage but there will be no tears shed when they come take this oxygen away.
All that said, I’ve come to realize that this is not the end of the world (take a trip to a Children’s Hospital and try and feel sorry for yourself) and it will be over one day but in that particular moment I was just so frustrated! I wanted a great report and I got a fine one. I had already decided what I wanted to hear so anything less was a disappointment. I did come to learn that day that Gaines’ BPD (his lung condition) was categorized as “severe” (as opposed to mild and moderate) when he first saw this doctor and that generally those kids are on oxygen until they are 3 (they think Gaines will be off next spring at age 2) and some are still on ventilators at this point. Kind of made me thankful for a ¼ liter of oxygen.
We got a great developmental report this week too. He was evaluated this week and was found to only be delayed in his Gross Motor skills (walking, basically) and borderline delayed in Adaptive Skills (feeding himself). The feeding himself thing is only because we don’t really let him try much. Every single calorie he gets is so important that we don’t really take chances with missing his mouth. The good news…actually I think its great news, is that he showed no delays in Fine Motor, COGNITIVE (!), Communication and Social/Emotional development. On some of those things he tested within his adjusted age and some he tested for his actual age so that is great. Everyday he seems more and more “little boy” to me. I’ve started noticing him doing things that Reed used to do and to me it means NORMAL ! Normal kids do that!
Now, if we could just get him walking. Please keep walking and weight gain in your prayers. I can’t wait for Gaines to be running around with Reed. Visions of two little boys running around our backyard kept me going when I was on bed rest and in a really, really low place. I know that God has that in store for our family. I KNOW without a shadow of a doubt that Gaines is doing this well because of your prayers. I’ve said it before, but Gaines was on his way out of this world and your prayers are the reason he’s here and doing so well. And that is the reason that while I might not do it everyday, I will keep this blog updated so that the people who prayed for Gaines can keep up with their miracle.