untitled

I can't find the words to say anything.
I am feeling like I ran out of gas with my energy and my faith so if you can forgive me for not being as  quick with my posting... I did write something in regards to 9/11 and what my family did...but I ran out of gas...

How am I doing at nearly 26weeks With baby Sarah... No sinus infection... Just she gets really active at night... I really can't sleep and with her punching my bladder It's quite painful...
Iam really not going to apologize about it...I am NOT that Duggar lady in AR who has 19 kids. I ADORE my children but I am not a real fan of being pregnant. Something about my losses/ and time in the NICU took my innocence away, that and I feel like I am going to be sick the whole time  and my anxiety about everything just tends to peak out.
Add in the recent genetic events with Jonathan and I and I''m simply worn out.
Kudos to the genetics doc for trying to get me into see the perinatologist. It was declined due to the fact the OB needs to do it and he's just not. I found a OB practice down at the University of South Carolina and if we don't see anythng happen I will call them... We need to see progress. We have been told  things need to be established earlier, rather than later. we all agree, just not my OB and that's not sitting right with anyone.
I have folks ready to go with me and punch him who've been with me through Jonathan's  nicu stay and the last pg with Daniel...
Well, That's all from me. For now

Kryptonite :)

We got our results back from genetics yesterday. The verdict is Jonathan has the same missing info on Chromosome 21 that I do. This explains a lot about the challenges I faced when I was younger with gross motor,fine motor,speech and learning. I had not made any connection before between what Jonathan was dealing with and what I had to overcome when I was younger.         We  asked is since Daniel doesn't appear to be having any developmental issues if he could possibly have this too. The Doctor said that if we had not seen any issues with him, that probably he was unlikely to have this problem. This was really good. We asked about if Jonathan needed any further testing my the neurologist and he said no. That was the thing that made me HAPPY. I don't want to make Jonathan do a blood test that is unnecessary and painful and would be hard to do. He is a very sensitive child and it's rather very traumatic to do anything medically invasive. Besides I feel really rotten having to do that to him anyway after everything in his life he's been through.

Then the conversation got a little different because  the focus changed t o the unborn baby inside of me. Because I carry the missing info on that gene, there is a 50% chance that she could get this too. It is the same gene that would produce Down's Syndrome (with 3 copies of the gene). I carry a minor deletion on one of the 2 genes..We asked if this was in any way related to the pulmonary and surfactant issues that both of our other children had. The answer from that doctor was that these issues were probably independent of each other and should be treated as such.  Because I knew that this doctor had ties to the work up in prenatal genetics (where my Peri is). I asked him if there were any way of getting the peri the  results from this and help us to get in to see him and make contact. He said he would and we would probably be receiving more care earlier .So there is our Kryptonite for my OB.. Whether or not he likes it is tough although we were supremely happy that at least we had an ally in our corner once again Honestly I do not know what the deal is with blogger today in it's formatting. but Be blessed and know that what ever it is you face with your family, please know that the more pro active you are for them, the better it will be in the outcome.

No I don't think YOU can walk on Water...

There will be multiple entries this week...
Not even Superman although this pic shows him flying on water. LOL
Honestly The last week and a half had me feeling lousy..
.It was my sinuses AGAIN. Happens twice a year. I need antibiotics to come out of that spiral.
Being 23 weeks pregnant makes getting treatment harder. That and I had weird symptoms before that which were somehow related to that BUT made it harder to call the right doc. Doc A thought it was ears. Seeing that he doesn't treat ears(he treats pregnant women) He sent me to Doc B(a fam. Medicine doc). Doc B. checked ears and says yes, it's the inner ear (a virus). sends me away with nothing other than "hope you feel better, I don't like treating pregnant women"...
Roll on the Floor Laughing(REALLY?)
By Friday I had gone to the chiropractor and had several points adjusted related to ears, sinuses etc. I felt lousy. The chiropractor is a great guy... I trust he knows how to do his job.
Thursday: I call the OB back and make an appointment for Friday morning.
Friday morning I go in and explain what was going on...OB treats it like the normal visit. with flowing robes and superman cape(see below I will explain). Without laying a hand on me writes out a rx for an antibiotic. Apparently he can see through skin. :-).
 They do all the standard stuff...Blood pressure(which is dropping), weight which has stayed stable. Go looking for the baby's heart beat... Only get mine. Lots of jelly and 10 minutes later. and some joking about putting tattoos to find the baby's heartbeat ..I am stressed out as this was one of those anxiety triggers for me that I remember my losses by.
Get taken to the ultrasound room and the doc fumbles a little with it but easily gets it. 157. The explanation is the placenta is right smack in front of her. We probably won't get it for a while by standard doppler. no ultrasound tech as she is only in that office on Wed. and apparently he is the only doc at the satellite office that houses most of the midwives(so screw technology).

Okay, for those of you rolling your eyes at me,let me explain. Apparently I have a uncanny ability to accidentally get docs who are arrogant control freaks who apparently know even other specialties.
My  husband looked on the OB's Practice website looking for safe over the counter meds to take during pregnancy and found  my docs profile...
Copied from the website but modified to remove his name or identifying info.
Dr. T is a native of Miami, Florida where he was in private practice for fourteen years. While practicing medicine, he was a founding partner in three biomedical device companies and holds various patents. He and his wife N met in Alaska while on vacation and were married at Mount Everest. They both enjoy adventure, travel and seize every opportunity to take their kids with them. They decided to come to Charlotte in 2009 for the wonderful lifestyle and family activities.
Dr. T performs advanced laparoscopy, including laparoscopic hysterectomy, in addition to routine obstetrics and gynecology procedures. He has a special interest and expertise in vulvodynia, vulvar skin diseases and chronic vaginitis. He is board certified in obstetrics and gynecology and is a fellow of the American College of Obstetrics and Gynecology.

Now this wasn't the end of what he found but I won't go into it.
Andrew and I were recently tested for the same Chromosome thing as Jonathan to see if any of our other children are at risk for being effected. The Test came back that I have the same thing going on that chromosome. It explains a lot about  my early life but leaves gaping holes as to Daniel and the unborn baby girl who kicks inside.(more on that after I go see the genetics doc on Tuesday)
Anyway, I tell him we got results back on my son and I and he starts the Superman act. I'm thinking the whole time ; So you think you're a genetics doc AND a perinatologist ?  He was telling me he wanted the results and he was probably dropping the amnio. Okayyyyy What the H. I hate these types. He hasn't made the referral yet and may not ever at this point. I am thinking of calling the office and giving them another chance to find me a different doc. at this point this is causing me nightmares about the nicu.
If  I cannot  make any progress in 3-4 weeks: We will go to the hospital, and file a complaint. We will look for another doc in wither another hospital or another city (driving an hour southbound if necessary- Columbia)
I prefer to use the hospital we have used  as they have the highest level care in the region, and having been a parent in that nicu I'm more confident in the care THERE.
I will try to get the genetics doc to get whatever I need for the perinatologist and hopefully it shuts up the OB when the Peri says no change.. Hopefully he can also get me into see the peri quite a bit faster (prayers appreciated)

My Thoughts on the Perfect Man.... (These are MINE- if you don't Don't like it you don't have to)
The ONLY perfect man was and is Jesus. He was the only one who walked on WATER (okay before he took Simon Peter on a wave walking journey).
He was the only one who saw someone's life and told her about her life(without her knowing Him). Woman at the Well..
There is no one like Him. And although you can try being like Him. He is the only ONE who is perfect... He is the Ultimate King and my Body pierced Super hero.
No amount of schooling or credentials can ever trump that.

Blessed