Friday, December 4, 2015
Well... Now I'm Angry and defeated. Another look at the kidneys.
Hello all!! Sorry its been so long since the last update! Been very busy still. Just throw the Holidays on top of that! Sheeesh! One tired Mama over here!
So things have been going pretty good! We had Celina's ECSE (therapy) Evaluation report about a week ago. All the therapists (5), Coordinator, And public health nurse all came for a big group meeting to discus Celina's results and where she's behind or needs more improvement. Eli thought it was great to have a house full of strangers to show off and do somersaults for hahah! Anyways. The meeting went relatively well. Nothing came out of left field. thank goodness! The areas she was struggling in I had expected. Her fine motor skills are fantastic but her gross motor skills are definitely behind. She cant hold her head very steady yet and tummy time she can't really get her head off the floor. Of course with her hearing loss her social skills are also behind. Our plan of action is: Special education once a week. Physical therapy every other week. Deaf & HH every other week, And vision twice a month. Speech therapy wont start until needed. These ladies are seriously some of the nicest people I've met! they fought over who got to hold Celina the whole time :D
We still haven't been able to get her hearing aids re-molded since Eli bit into the one. So she's been wearing just the one for now. On the 8th we'll finally get to Children's to remold! Dr.J had me look in my area to see if there was an audiologist who could do just the maintenance so I wouldn't have to go all the way to Children's every two weeks for a fifteen minute appointment. Let me just say, I can't believe how ridiculous it is, I had an Entire list of places to call who were closer than Children's, And NOT ONE would take an infant!!! So frustrating!
So here's the part where I'm completely disheartened and cant even pretend to be positive about. Today Celina had her 4 month well child check. I brought up to the doctor that many times I've had a specialist tell me Celina has high blood pressure. When I would ask those specialists what it means, they just tell me "it has nothing to do with what they're specifically looking at" and that's that. Well. After about the 4th or 5th time hearing it I decided to bring it up to Dr.CL. I guess I thought because the specialists wernt looking into it (especially the cardiologist) I figured it probably wasn't anything too concerning otherwise they would be jumping on it. I was wrong. Dr.CL Looked at her charts and couldn't believe how high hers was on multiple occasions. He told me that there are 3 reasons an infant has high blood pressure. 1. Heart problems. 2. Kidney problems 3. No explanation. which he explained as there is always an explanation they just cant find it. So. He's Now sending her to a kidney specialist. We've already done extensive heart testing and her PDA is so small it wouldn't cause it. And she had an abdominal ultrasound where they looked at her kidneys, But Dr. said they can "look" completely normal, but doesn't necessarily mean there isn't an issue. So now were going to do more extensive testing. Renal Artery Stenosis is what Dr.CL wants the specialist to look for. Its where one or both of the renal arteries are narrowed slowing blood flow to the kidney. Which can cause High blood pressure that can then lead to stroke. Kidney disease or heart disease.
Now I KNOW this isn't a definite. For all we know she can be completely fine. But seriously. Will it ever end? I don't know how much more I can handle. And this is one thing that can have a life or death consequences. I get to worry. and freak out. and obsess again until we have an answer. I thought I knew where everything stood with her after all the tests we've put her thru. To then be told they could have missed something? I'm just tired. So tired. I honestly don't know how much more I can take. I think I've finally broken. I don't know why I'm mad. Or who Im mad at. Im just mad. Mad at the world. I pray this anger passes soon.
**Forgot to add. Given all Celina's congenital issues. He's strongly believes we will find and see an explanation. Ruling out the "no explanation" option.
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I can understand anger it's all part of healing,this too shall pass,God bless you cheryl,sending love and prayers,celina is doing great our lil princess she strong like her mommy
ReplyDeleteWe are human dear. Allow yourself to feel these emotions. Whether it's anger or sadness of fear or confusion. God is with you all! He will give you strength. Just take it day by day, or sometimes it's easier to just go hour by hour. You have two beautiful children and sweet Celina is such a strong girl!! But you my dear, are stronger than I could ever be!! God sure is carrying you and giving the strength that is needed to get thru. Oh keep sighing to God. He hears you!! Love you so much! Aimee Kangas (Hendrickson)
ReplyDeleteWe are human dear. Allow yourself to feel these emotions. Whether it's anger or sadness of fear or confusion. God is with you all! He will give you strength. Just take it day by day, or sometimes it's easier to just go hour by hour. You have two beautiful children and sweet Celina is such a strong girl!! But you my dear, are stronger than I could ever be!! God sure is carrying you and giving the strength that is needed to get thru. Oh keep sighing to God. He hears you!! Love you so much! Aimee Kangas (Hendrickson)
ReplyDeleteThank you guys! I hate to be so negative. I just cnt help it right now. Thank you so much for your thoughts and prayers.
ReplyDelete