We are coming up on our two year mark, with a lot of different things. First with our move here, and I am okay with that. It has been challenging at times. I do miss seeing family and friends, but have made some pretty amazing friends here too. Second, Jaida is almost two. Can hardly believe that she is going to be two in just a few short months, crazy right.?! Along with that allow me to be a little pessimistic, remember that I do remember what a special blessing and miracle she is. Most of all she has been a never-ending example to me of the fact that I need to endure to the end. Man, it is getting old though. The doctors visits and tests are so old and I get so over it! Some times when I am in the doctors office I just want to scream.
Well this past month has brought some new challenges. Jaida is getting older now and can jibber-jabber (some words we can make out and others not so much) and she is definitely a very strong personality. If she doesn't want to do something than you can pretty much forget it. She will kick, scream, cry and do whatever it takes to make sure she doesn't have to do it. Getting her dressed in the morning is sometimes a complete nightmare. So you can imagine my anxiety as I have to schedule these CT scans, Sleep Studies, and Echo cardiograms... right?
Oh yes, it is just a blast!The CT scan for example when we have to go in and be there 1 hour early and wait for what seemed like an eternity to be seen. Let me also remind you that it is done at Johns Hopkins Hospital, where she was an inpatient for a little over 3 weeks. I am not kidding you this girl has radar for this place and once we step foot into this place the gloves are off. She hates it there. So they take us back and give us a male nurse, I immediately knew this was not good. Because if you knew Jaida, you know that she also has a huge problem with trusting males for whatever reason. (Trent and I think it may have something to do with her extended stay at the hospital and being always around female nurses and for whatever reason the male doctors and nurses were the ones always poking and prodding with her.) So I asked to please have a female nurse come in, that immediately brought Jaida's anxiety level down a notch. You should have seen the look on the poor guys face, DEJECTED! They place her IV, that was no easy task. It took me and another nurse to physically hold her down so that they could accomplish this task. Then finally they take us back and then they tell me to stand in the room with the scanner and hold her very still so that they can get some good pictures. Yeah right, they just tick her off to no end and she has this IV in her arm and now you want me to hold her completely still. All the while she is crying and screaming " No, Mommy, No Ouchies!" The saddest thing! Skipping forward... after holding her down screaming, they got her pictures that they needed and she had actual bruises on her arms from me holding her down. We both left feeling traumatized! Who likes to see their sweet baby have to do things like this? not me! That test came back normal. I guess that is the good news.
Now the sleep study. I absolutely do not look forward to these night that are supposed to "simulate" a normal nights sleep. I am not sure I know of anyone who normally sleeps with 50 electrodes and wires coming from their body. I felt the anxiety creeping up on me about a week in advance for this test. I did find peace in knowing that their were many people fasting and praying on her behalf. I felt it. I was grateful for it. In my head I was envisioning what happened during the CT scan and did not want a repeat! Things actually went pretty smooth. Jaida got a pretty good nights sleep, but I was not so lucky! We have to share a twin sized hospital bed and every time I attempted to move she would kind of whimper. So in fear that it would wake her up and we would have to start this over, I laid in a weird position all night and closed my eyes here and there. I knew it meant she didn't pass when at 3:30 AM they came in and turned on her oxygen. Shucks! I went into this knowing that there was a pretty good chance she wouldn't pass, but you always have that small hope. She made it 2 hours longer than normal without oxygen and her oxygen levels didn't dip as low. We are celebrating her baby steps here!! Both of us couldn't wait to get out of there the next morning.. they kick you out at 5:30, we beelined it for the door.
Echo cardiogram.. what a joke! We had to wait forever in the waiting room. it was super crowded and they were way behind. Jaida was not having any test done... PERIOD... she was just not happy at all. They tried for a good hour and after that I was like ~okay, enough!!!~ This was not working. We gave up and they said to come back in 6 months when she was a little older and could sit more still.
So you see we have just been having a blast here at the Belliston home! Somedays I just want to scream and throw a fit just like her, but I don't I hold it all together. Okay I lied, sometimes I do throw little tantrums. And you know what, it is okay!
So we have almost hit the 2 year mark... it seems like longer. We still have no answers, no reasons why, no new insights. The doctors say wait and watch. Remember how I said I was learning how to Endure, yeah it is not very easy. I am trying to be graceful, brave and not the crazy psycho lady!
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5 comments:
I am so glad I was able to read about your experiences. It put everything in perspective for me and made me feel a lot better. It's so hard not to have answers! Thanks for being such a good example of strength and endurance. I hope our little girls can get through all these hard things!
Your thoughts bring back so many feelings about our ups and down with little Emma. The doctors visits especially were so mentally and physically exhausting, then they would just pass us along to someone else. We had some real challenges and lots and lots of physical of therapy etc. It can really take over your schedule and mind when you worry. I remember. Sometimes the only thing that brought me peace was the promise in a blessing I received that everything would be okay. It just took time. Hang in there!
Oh Mikelle sending you hugs. Wish I was there to help whether it is holding Jaida down so you wouldn't have to (it seems worse when it is your own kid), watch your boys during doctor appointments, talk, cry, make you dinner or whatever. I know I always say this but wish we lived closer. . .
Joe always tells me that I would never grow if I didn't have trials and I hate when he says that even though I know it is true.
You're awesome and strong and such a good mom.
You're my hero. I raise my diet coke to you. We love you guys lots!!
You are such an example. Best wishes.
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