First off let me start with a disclaimer. This post is to inform everyone with the many going on's in the Kaestner household. But during this process you may find that there is too much info for your liking on somethings and then on other topics there may not be enough information for you. If you are interested in more you'll have to contact me directly and even then I may not give it up. Also I'm going to vent a little of my frustrations and thoughts, non of this is to offend anyone just to vent. So if you think you may be offended then stop right here.
Okay now for the meat of it.
First off it can be a long drive to Birmingham. It's only about 2 hours away but that first trip down to see the pediatric Gastroenterologist (Gastro) it seemed like forever. I had no idea what he was going to say about Rayne and what his ideas were about her not growing. It didn't turn out too bad. The Gastro was a very nice guy even though his name was Stephen King (No Joke). He listened very nicely to all or our concerns and ordered just about every test in the book. The blood was drawn that day and an appointment was made for three weeks later to have an ultrasound and Barium Swallow X-Ray done. And off we went to grab some lunch and head home.
Three weeks flew by and testing day came. Short story IT WAS AWFUL!!! Rayne was hungry, tired, and did not like being held down for her x-rays. Thankfully I could go in so I could sing to her and she would know I was there. We got the results later that day at the Gastro. The x-ray confirmed Rayne's reflux problem and showed an abnormality with her ovaries. Which meant another specialist. Urggg. On our merry way we went. Only to go back the following month for a repeat ultrasound and a visit with the Endocrinologist.
Our lovely Endocrinologist had the test results before we got to the office. Which were normal this time. She said it was not uncommon for children Rayne's age to have temporary cysts on their ovaries. Slight crisis adverted. But this meant no true answers. She wasn't to worried about Rayne's lack of growth because... "Well she is still getting taller." Really? Okay she is taller but did you see how tall she was to start off with?? You talking about how the child needs to stay on a curve and my child is almost a flat line. Oh well moving on. More blood was drawn and a return visit set up for January. The blood work checked her Thyroid, and Electrolytes. Both were normal. That made me very happy because Thyroid problems run rampant in my family and normal Electrolytes means Rayne is getting the basic food she needs. Lack of growth isn't from lack of food. Now maybe they will believe me when I say that she does eat.
Shortly after this visit Rayne's already iffy sleeping habits take a serious turn for the worse. Back in January Rayne had settled into a pattern that left me tired but was extremely predictable. Length of time and time of day were consistent almost to the minute. Around May things slowly declined. We tried more food, cooling the house, more cuddle time during the day. Sleeping with her at night. We even invested in a new sleep chair. Some of these things helped but never for long. In June Rayne started waking up every 45-90 minutes. Sometimes she would go to sleep with just a bottle, or rocking. Other times she would be up for 2-3 hours. And nap time was almost non existent. I didn't know what to do.
Since the biggest culprit seemed to be her breathing we went to the Pulmonolgist. Oh did that visit suck for some many reasons. First he bashed our family doctor, Dr. Richards, who I love and has be wonderful for us. He was the one that pinned Rayne with her condition and got us into the Pulmonolgist in the first place. Oh and Dr. Richards diagnosed Rayne by what we told him and being in the same room for 5 minutes. Rayne was seeing someone else that day but Dr. Richards wanted to check on her. So her was my Pulmonolgist saying that I needed to change doctors because Residents are dumb and we should have more specialized care. And Dr. Richards shouldn't be stumped by Rayne not sleeping. HELLO!!! Rayne currently has 3 specialist stumped. Why can't the Family Doctor be stumped too?? Secondly the Pulmologist tried to scare me into giving Rayne shots. Telling me stories and saying that kids die if they don't get vaccinated. Okay I'm not an idiot and I'm not not doing shots because I think the medical world is wack or I believe it will give my child autism or that they are useless. We are WAITING to do shots because first off family history. Both sides have shown a wide variety of reactions to shots. I get site infections and end up on antibiotics, Fred will get sick for nearly two weeks. Nope don't feel like putting my child threw that. Secondly, I am a stay at home mom who gives breast milk to Rayne. And if there is an outbreak I'm completely fine with quarantining in my house. Lastly Rayne has gets poked and prodded enough for reasons she can't understand. I'm not going to add to it if I don't have too. Anyway--------So I left there with no answers and really angry. I still like our Pulmonogist but I hope I never have to do that again.
A couple weeks later we went back to the Gastro. He actually wanted to help Rayne sleep. His thought was maybe her reflux wasn't under control and waking her up. So we left with two more reflux meds to see if that would help. Well it wasn't the miracle we were hoping for but things have gotten better. Rayne no longer needs to sleep in a chair, we have moved her into the pack n play! The sleep isn't perfect but we are up to four hour blocks of sleep more often. WAHOOO!!! There are still a lot of nights we have to sleep with Rayne in arms but it's a little better.
This past week Rayne got some sort of bug but we are on the up swing of that. Yesterday she decided it would be fun to get her first bug bites. Fire Ant bites!! She didn't even cry, but gosh are they nasty looking. We have a follow up with the doctor about her flu-ish thing tomorrow and I'll get the bites looked at too.
In Fred News
We finally have his reflux under control. It took three different prescriptions to find the right one but we got there. He also had to have a scope and they found several abrasions on his esophagus. That was why the pain of is reflux was so severe and long lasting. So a couple weeks of an extra med to help heal the abrasions and life is looking good. He is still battling some insomnia, but he is holding up well.
Fred has been really great at helping me out. I have to tell him exactly what I need but after that he is right there. Fred is also a great Priesthood leader. He is a driving force behind family scriptures, prayer and Family Home Evening. Are we perfect HA!!!!! But the increased frequency has brought the spirit into our home and during this time where really no one is sleep we are still getting along and peace is pretty well maintained.
For me, well Rayne's life is kind of my life right now. But there are a few highlights
--There are three times a day my life really stinks. Its when I have to give Rayne her medicine. I hope no one I knows ever have to do what I do.
--I'm so very done with people telling me how little their kids where and how just one day their kids where caught up. I understand they are just trying to be kind but what makes you think I want to hear about your child's growth spurt at 9 months??? It is kind of funny to say that Rayne is almost a year and watch those people's faces drop.
--I do LOVE how people fawn over how cute and precious Rayne is. A lot of that has to do with how little she is and how bright those eyes are but Rayne loves it when people smile at her.
2 comments:
Maybe this is a stupid question, but have she seen an allergist yet? My neighbor's little girl just turned 1 last week, and is barely 18 lbs. She had a whole allergy workup and they finally found some things that were working against her. Obviously Rayne's medical problems are farther-reaching, but that could be another possibility to look into.
Also, I was thinking of something random the other day. You said that you have a hard time finding shoes that are small enough for Rayne but still have tread on them. I saw something online a few weeks ago about how to make a non-slip rug without having to buy a whole mat to go under it: just pipe caulking in long thin rows on the underside of the rug and let it dry. It would be ugly, but I bet it would work with her shoes, too.
No we haven't seen an allergist but what allergies we have seen are going away. And there allergies the specialist have tested for are all negative so chances are it is not an allergy thing. Mostly she just uses the calories she eats for one reason or anther.
As for shoes thanks for the heads up, but her feet have just entered size 2. Which opens up a wide world of tread. We inherited 3 pairs of shoes with tread and I was able to find water friendly shoes with tread on Amazon.
Post a Comment