i am not sure about the funk i am in...but it is a funk...i am completely baffled about our visit to the Down syndrome clinic...oh it was good -in the moment...i really am pleased with the service and so forth...what is killing me...the results...and with the results comes more...more tests...more studies...more doctors appointments....more surgeries...and more hospital stays...so the funk will continue...in February i said to chad i think we are good...i feel so great about Maddie's health...i said this is the first time in 4 years that we did not have a scheduled surgery in Denver...and then that all crumbled with Maddie's sleep study results and results from the Ds clinic...i called back for clarification of the sleep study...i called Maddie's pediatrician to take a second look...and i asked why we have waited so long to do this...how long has this been going on...and then there is the guilt of me not understanding or knowing or doing more and sooner...i am not an expert...and there is no handbook when it comes to raising or caring for my child...i have to make it up as i go...and in these times i feel like i have fucked up...i am not sure of the damaged that has been done to my child...there is several parts of this visit to Children's that is making me rethink how we have done medical care for Maddie...first the sleep study...with that the results are that she has severe obstructed sleep apnea she stops breathing an average of 11 times an hour every hour through the night...very common...i get it...but it is not just "routine" when it is your child...they will take her adenoids and tonsils out in a couple of weeks...repeat the sleep study and see if the problem has "fixed" itself...so she will continue on oxygen until...oh but that is not all...the fear of aspiration has come up and that her TEF has returned...so in a couple of weeks they will check that out...that is a big deal...then the never ending esophagus...low muscle tone...chewing...eating...yuck...can i just say i am so over it...to our knowledge Maddie esophagus is open...but we do not know if she is also aspirating when she eats...if she is strong enough to chew...(Maddie does not shew when she eats unprompted, when prompted it is not productive) and if things are moving through correctly...so on Monday we will have the swallow study and feeding evaluation...not a big deal...until it is your child doing it...i do not want results...i do not want findings...i do not want more appointments...surgeries...therapy...explaining why we do this or that...am i feeling sorry for myself...maybe...but i am bummed for Maddie...again she will return to a hospital baby...she will become complacent...she will become bored...the gains she has made from being "healthy" the last couple of months are incredible...i know this is life with Maddie...i get it...and i will do it...anything...but i have to let it out...and letting it out does not include rehashing Maddie's medical history to every doctor we are going to see...we are seeing a lot of doctors...we are going to what is called the areodigestive clinic that includes but not limited to GI, ENT, pulmonary, and a array of therapists...it is a 4 hour visit...and then surgery on conclusions the next day...it is fast but efficient...I am also frustrated that only recently we were able to afford to do all this...we have had to put what we can afford and what is absolutely necessary first...i cannot believe that i thought that a sleep study was a when we get to it...when we can afford it...insurance does not pay for this unless...and the unless comes from the help of other doctors...i have advocated about Maddie sleeping so much for over a 2 years to anyone who listen...i have advocated about her awake snoring for at least a good 1 year...and i have understood from the beginning that Maddie would have her tonsils and adenoids removed...the issue -my baby stops breathing at night...and what if...what if she did not wake up...that is my fear...so again i guess this is a members only thing...only people who has the knowledge that there child stoping breathing 11 times an hour can understand that it is fucking scary...i kiss her every night in the hopes that when day breaks i will be able to repeat it the next night...so again is this "routine"...probably until it is your child then it is reality and dramatics sets in...the TEF is also an unknown...this is what Maddie was born with a interaction between her esophagus and trachea...that was "fixed" but we knew it could come back...and there are signs that it has...this uncharted territory for us...because it was not what we expected...but it is something we have to address...Maddie and eating is just a ongoing issue...not one we really think about anymore...she eats certain limited things and we provide her what she wants...that is it...i am not going to push an issue when medical care is 4 hours away if a bad eating choice happens...that is our reality...and there it is...my funk...i was so hoping that this would be the year of no hospital stays...but it is a record to make until April...small victories...so i will continue to belly breathe and go through the motions of being strong like my Maddie...
Here is Maddie sitting on the potty talking on her cell phone and enjoying the alone time! I should be frustrated...but I am not...I should be trying harder...but I am not...Maddie will be 4 in a few weeks...and over the summer I think I will try more...I just have this feeling that Maddie will do it when she is ready...like everything else in her life...we are on Maddie time!
