FINALLY AN UPDATE (LONG)

I am long overdue for a blog update, and I apologize to those who still visit my blog. There has just been way too much for me to try to catch up from my last post to today so I will update on a few random ones and I will TRY to be short.

For one, THANK GOD, Brianna still has her THE VEST and we have not yet had to invest a cent as of right now. The expiry date of the insurance authorization is June 5th meaning this Sunday. We are waiting to see what the insurance will say, but for now our pulmonary DR already put in another 5 month request, keeping our fingers crossed that it gets approved. We have also not had a problem getting pulmozyme (remember the very expensive medicine) we have had our monthly supply now for 5 months (expiry date was yesterday we received our “last refill”) awaiting insurance response on this also.
** For those of you who donated, or know someone who donated to Brianna’s fundraiser for her THE VEST and pulmozyme please know that we have deposited all the CASH into an account for Brianna and it has not been touched in the least** Please note we have not deposited most checks but will do so soon if any of you donated checks and would like me not to deposit or deposit at a later time please let me know before this weekend** Thank you ALL again for all the love and support the money is cushion for any further needs for Brianna (medical necessities/therapies) or if we get denied an extension on the THE VEST we will now be making an offer.

Since my last update Brianna has been doing failry well. She has had to do 3 different courses of antibiotics for respiratory infection PLUS as a preventive for pneumonia during these infections, she is currently on a 10 day course now as well as a 5 day steroid course for a respiratory infection. She had her first ear infection and was treated with antibiotics as well. (This child has had too many antibiotics). Besides that her left lung continues to recover amazingly she seems pretty much back to normal besides the little bumps with allergies and respiratory infections (but we have been able to treat them at home! That’s a major plus).

Medical update for Bri… we had our first two visits with Infectious Disease/ Immune Deficiency/ and Hematology they started doing their main T branch immune system testing which requires a whole lot of blood from our tiny Bri so we did this in two sections… we received the results looks like she has within normal results for what they have tested so far and even tests above average in some antibodies… we currently have the lab paperwork to take her for the second part of the testing (we are waiting for her to feel better from her respiratory infection) now they will start testing the smaller branches of the main branch of the immune system. These visits have not been fun much less easy to handle and absorb information… ultimately they may not find anything that they will be able to help her with (Drs words) and the cause of her reoccurring pneumonias may just be her anatomy (her chromosome build up which is very unique (she’s a very unique girl J) and treatment will continue to be physical (THE VEST, the breathing treatments, CPT chest percussion therapy, antibiotics/steroids as needed and hope she gets stronger in time to fight these pneumonias. Not easy to swallow then again he says the further they get into testing the least possibilities there are about finding something “terribly bad” … yeah so a whole lot of nothing in something. He said we will eventually test her for “everything” even X (male linked) disorders just to make sure she isn’t the small percentage before dismissing it as just her anatomy. Lets see what happens there.

Brianna’s adenoidectomy and ear tube placement surgery (surgery #4) will take place July 22nd at CHOC Childrens Hospital. Yes, the ear tubes is a new one… she recently had a second hearing test which showed mod-severe hearing loss and they suspect its fluid retention based, her ear fluid is jello like and isn’t draining on its own, the only good thing here is that she will have both procedures during the same surgery and wont have to be put to sleep two separate occasions. We are hopeful that this will promote her speech she is so eager to speak and besides her ACC (brain abnormality) there is no physical reasons why she cannot speak (besides them now suspecting is her poor hearing). She will not be getting her tonsils out further testing revealed her tonsils are small and are not the reason for her obstructive apnea only her adenoids which are 3X’s larger than they are supposed to be. Pre op on July 14… will keep you all posted.

My sweet little 3 year old girl continues to amaze me daily, literally. She is still a perky, jumpy, little miss attitude, happy happy little girl. She is learning new “acts” like walking off the couch daily and learning new words/signs all the time. She is my hero.

Now a few other updates.

Hailey, my big beautiful girl, turned 6 on May26… I cant believe it!
We had a cake and piñata and a whole lot of presents for her at my house. (Piñata was her request I don’t know where she got the idea she hadn’t had one since she was 2… J ) we had a blast celebrating our big girl, she is so proud to be the big 6!

Her bday was a busy day… (besides Briannas dr apt in the a.m and my apt in the afternoon after I got off work)… she had open house that evening before her birthday celebration (omg shes almost done with Kindergarten!) I will post pictures of all this soon… have to upload them J Hailey like her baby sister continues to melt my heart daily… she is growing into such a loving compassionate respectful little girl I couldn’t be more proud to call her my daughter. Times haven’t been the easiest for her but she is coping and is learning. I haven’t posted about this really but we finally talked to her around November/December 2010 about my husband being her step-dad (her HEART dad by choice) and who her biological-dad (her BLOOD dad by birth) is. She shocked me by how well she understands this (for her age of course). Slowly this will be natural for her. She has been around her biological fathers family now for a few months and really enjoys visiting, especially meeting her 9 (or 10) year old older sister. She is asking a lot of appropriate questions and really understands that she must appreciate her HEART daddy for stepping in and choosing to be her daddy and raising her so lovingly yet appreciate the man who gave her life and slowly understand that he does not have much of an option about being near her at the moment. I want her to know she was a product of love and to never feel unwanted by her BLOOD dad, because its not a pretty feeling and because it simply isn’t true.
- Not sure if I already posted this but Hailey was hospitalized for a week in March for a bad UTI and kidney infection, dental abcess and an oral herpal virus that caused her to loose the ability to eat or drink anything to keep her alive so she had to be on supplemental IV fluids the entire time. Shes much better now fully recoverd… ummmmm did I mentioned she cracked her forehead today running into our fire extinguisher? Lol shes clumsy but shes ok.

Anywho… she will be graduating Kinder soon will post pics of my big girl. Transitioning from K to 1st wont be a biggy for her as she has been in full day Kindergarten since day one, and she’s technically been in school for 12 months (she started a year round school in June and then moved to the regular schedule school months later) so she’s got it down.

Update on me.

Sigh. There is so much more going on Id like to have time to update all but it would get too boring.

A while ago I was diagnosed with a complex ovarian cyst, had been causing me horrific pain for months I assumed it was still there. Yesterday I was diagnosed with Endometriosis and was put on birth control pills for hormone balance, lets see how that works out for us. I will be on a 3 month trial, if this does not work we will opt (discuss) gynecological surgery to remove the endometric tissue or something. My big cyst is gone, but now I have a bunch of tiny ones and a big fibroid we need to keep an eye on. I have also been put on blood thinners due to a blood clotting stress test testing high and my family history of stokes and blood clotting disorders. I have been having weird shock like sensations throughout my body for a while and back and stomach pain for some time (which they are now guessing it’s the endometriosis) but are sending me for a transabdominal ultrasound of all my major organs and blood work again to check my liver and pancreas function. Will update on that. (Oh yeah did I mention Ive had heart cavity swelling twice for no apparent reason and am on 600mg ibuprofen for that daily 3 xs a day as an anti inflammatory med) yai lots of fun.

Yai I updated a gloomy post… its really not been all that bad as it sounds its just that I know people expect more of a medical update at this point. I also celebrated my 23rd birthday on May 29 (yep Hailey and I are close in bdays) and we have been enjoying the warm weather with Zoo trips and outings J will post pics of that also.

I have been reading EVERYONEs blogs who I follow, I have to admit I get sad when I don’t see an almost daily update from you guys yet I am horrible at updating mine LOL. I am Facebook addicted you guys can find me there also under Araceli Sandoval-Reynoso I tend to update that daily and do throw in medical status updates on my kids and self on there.

I am probably missing a lot that has been going on but ill do that on a later post J much love to all my family and friends <3

_ I have a nice story to post about a man I met driving down the street who is a father to a 3 year old with C-ACC but Ill leave that for its own post, its deserving_

Araceli
Mommy to the most precious princesses on earth… Hailey 6years and Brianna 3.8years