Saying no

 We've been very busy lately, sometimes there just doesnt seem to be enough time in the day.  Like today we went nonstop first we had to drop Sunny off at the groomers, prepare the house for all the appointments we had, and then the appointments started...  First we met with the teacher from the parent infant program at Clarke school(non-hearing school).  Which overlapped with Alexa's OT appointment.  This apparently made Alexa way to overstimulated and she had meltdown after meltdown the rest of the day.  After her OT appt I had to pick Sunny up at the groomers.  We go to a grooming school, so students groom him and we only have to pay half price.  We got him shaved for the first time and he looks like a little puppy again.  After that Alexa had her speech therapy appointment.  Let's just say that by then she was to exhausted to function, and was miserable the entire time.  Throughout all that I had Kaylie do a days worth of school, and an art project.   Sometimes I just crave a little peace and quiet. 



How do you say no to that face!

 We've been trying to figure out how to balance not spoiling Alexa and giving her boundaries in the midst of all her medical problems, pain,appointments and procedures.  With Kaylie everything seemed so easy.  We set rules and we followed them resulting in the amazing little girl we have now.  With Alexa it's so hard, because there are so many exceptions to the rules.  Like when she's crying incessantly, for what would appear to be nothing, how do we know?  Could she be in pain, is she trying to figure out if we'll be there or could she be scared?  How can I not hold her when thats all she wants?  I love to snuggle with my little monkey.  The only thing is thats all she wants to do and it makes it very hard to get anything else done.  When you have a baby that has been through so much it's so hard to say "no."  When we think about our time with her we want everythiing to be great, as we dont know how long we'll have.   We want her life to be filled with joy and love not pain and procedures.  So how do we balance our love for her with discipline, and behavioral expectations?  We dont want her to be bratty  and we've been seeing some signs of that lately.  I'm trying not to give in to her every whim, and ignoring her when she is in meltdown mode.  Her therapist have also been giving us some ideas.  I just hope I'm strong enough to stay true to them. 

Lets just move in here

We were at my parents this past week into the weekend looking at houses.  We found one we absolutely love, but unfortunately so dont a ton of other people...  It's in Fairhaven, and although on a somewhat busy street has a great fenced in yard, and is so close to parks, and schools.  The house is big and beautifully renovated, but with all sorts of built ins and sooo much storage space.  We offered the guy a higher down payment in hopes that that would make him want to rent to us.  He said he'll get back to us at the end of the week.  The other house was a dud and the real estate agent didnt even show up...  How rude!  Hopefully we get the first house but if not it gives us more hope that something suitable will turn up.

Best buddies already

It was nice being with my parents.  Kaylie was able to go swimming in the 98 degree weather, and Alexa had some good bonding time with her cousins.  I think they even influenced her to start taking in food again.  She couldnt let her little cousin Kira be doing more than her.   She started trying more foods, and is even requesting things.  Yay!  She can only tolerate a few tiny bites, but we'll take what we can get.  It's so nice seeing the girls together.  They make me so happy.  I love the fact that Alexa has built in friends her own age.  Kira and her seem to be learning so much from eachother.  They are both picking up sign like crazy.  Kira is able to verbalize more, but Alexa moves more.  Ella is like the little star she is so active and smart.  When we move closer we'lll be able to have them all spend more time together.  They'll be like the three stooges lol or maybe the 3 musketeers would be more appropriate.

She loves carrying bags around no matter what size

Alexa's tummy has been giving her so much pain lately.  She fills up with gas, and because she has so many motility issues it just stays there.  We use the farrelle valve at night but she's been so uncomfortable I think we need to start doing it during the day as well.  She gets all distended, and you can hear her button (g-j tube) bubbling and leaking bile.  The bile is like acid and burns her skin causing a lot of skin breakdown.  I've been changing the dressing every 2-3 hours and putting aquafor on it to protect the skin.  We also have been giving her tylenol and motrin constantly.  Poor kid just keeps grabbing her tummy, and crying,  Its so sad when she looks at me with those big eyes begging me to help her signing hurt.  I feel so helpless.

Alexa's also been experiencing a lot of apnea episodes.  They've been much more frequent lately.  When this all first started she would only have apnea episodes 1-2x a month then it went to every 2 weeks to every week, and now it comes in clusters night after night.  We were hoping it would get better, but it has only gotten worse.  This is not good.  We are in constant fear that she will have an apnea episode that will lead to respiratory failure and we will not be able to get her out of.  With the episodes coming more and more frequently it becomes a more likely scenario than not.  I'm terrified I will go in one time and not be able to save my baby.  I just hope this isnt the case.  We've also noticed her right side has become weaker.  She isnt able to pivot on that leg anymore.  We're working on that with her therapist.

This weeks schedule is no better than last we have appointments nearly everyday.  I just hope I can find some time to get some packing done.  I'd like to have that all done BEFORE we move... 

I wrote most of this yeterday just didnt have time to post it... So if any discrepencies in my timeline it's only because I wrote about yesterday...