Neuro & my sweet niece

Yesterday was a rough day for us. Autumn started running fever at 3:30am. By morning she had no fever & we had a long day planned so off we went. She had therapy & was measured for a brace to help her core strength in PT. I also discussed bracing with the rep & she is going to brainstorm what would be best. During both therapy sessions, Autumn needed suctioning constantly & either her vent of oxygen to keep her sats up. She would go into the 30's...I was already tired by 11am. We came home for a quick lunch & for me to call her wheelchair company. I had to get angry with them because we still have a broken wheelchair & it's been over a month. By morning they did not know how much longer but after my fit...I got a call at 4 pm that they were ready to schedule her chair to be fixed Fri or Mon. I could go on a long vent about this but I won't because I am sleeping right now. ;) We then headed off for our 2pm neuro appt. I swear we suctioned Autumn every 2 mins for over an hour...it was crazy! She also had to have oxygen on or she would desat. After waiting & suctioning for over an hr we finally got called back. I told neuro about the increase I have seen in Autumn's staring speels so they increased her seizure meds a little so hopefully it will help. Autumn's suction machine almost ran out of battery by the end of the appt & we headed home. By the time we got home at 5pm, Autumn was pale, lethargic, & running a temp. She started having chills as well. I got aggressive with breathing treatments. It seemed to help..she ran a low grade fever today & was tired but started perking up by the end of the day. I think this week just did her in from all the appts we had & the sleep study may of pushed her a little too hard & then the slight aspirating from the swallow study probably did not help.

I want to about my sweet niece. She wrote a report for school about Autumn. It talked about her Monday on spring break. She said how we went to the Arboretum together & how Autumn started crying. She talked about how Autumn has spina bifida & she can not walk or talk & probably never will. She told how she even eats & breaths different than we do. She told how Autumn is almost always happy & cheerful. She talked about how that night she got a torn in her foot & it hurt really bad. She said she thought about how Autumn probably goes through the same or more pain than that. She said how we complain about the tiniest things and she is not sure about you but she wishes she could be more like Autumn. Yes, I cried when I read it. To know Autumn's little life is having an impact & influence on my 10 year old niece makes my heart so happy! My niece was also asked to read her report to the class which makes me proud her words can now impact the thoughts of her classmates.

Sleep & Swallow Studies

Last night Autumn had her sleep study.  I guess the night was good but not really sure how the results will look to her doctors.  I should hopefully get a call from them in the next week to hear results.  They had her on no breathrate all night.  She is suppose to be at a 14 but we have been weaning her ourselves since she wakes up with too much breathrate and we have found she likes to stay between 6-10 breathrate.  The breathrate is how many times a minute the vent takes a breath for her.  It's irritating to her so she takes her vent off because it gives those extra breaths and blows pressure.  Anyways, she did have some apnea episodes (which was expected).  One time her oxygen saturations went into the 50's but she recovered on her own.  The tech said she was dreaming at the time & it was not a severe looking apnea, just mild.  I think she desatted about 8-10 times throughout the night.  It may seem like a lot but without any breathrate, it's pretty good.  At home, we would of already had a breathrate of 6 or 8 on her to keep her sats up.  I do know she said her CO2 levels were good all throughout the night so that is really good.  We will see what the drs think & recommend.

I picked Autumn & daddy up at 5am this morning.  As soon as I got her home, I gave her a bath to get all that goop out of her hair...had to wash it 3 times & then finally comb it out. We left the house again at 8:30 to head BACK to Baylor to do her swallow study.  I was so anxious about this appt.  First off, I had no clue where to go because it was in the big hospital part & I am use to the other hospitals.  I do not do well with the unknown.  I also had my day nurse with me instead of my SIL & she is not quite as helpful.  Jen just knows my thoughts before I even speak them & knows exactly what needs to be done without me telling.  I asked for prayers & they were answered.  My nurse did awesome meeting Autumn's needs while I go us registered & holding my ipad so Autumn could watch Elmo during the swallow study.  The speech therapist was awesome as well.  She let me do the feeding since I felt Autumn would respond better to me.  She first had honey consistency & aspirated.  We then tried nectar and she did fine.  We tried pudding and she did fine with that as well.  Lastly, we tried thin liquid and she aspirated again.  Honey is between nectar and pudding so for her to aspirate it was strange.  The therapist said they see the first bite aspirated the majority of the time so she think that is why she aspirated the honey.  So, she is recommending we work on any consistency from nectar-pudding in feeding therapy & also recommending her for vital stimulation, which is electrical stimulation to help with swallowing.  It can be helpful in strengthening, restoring function, and help remap the brain to swalllow. There can be issue with seizures though so tomorrow at her neurology follow-up I will ask her dr. if it will be safe for her.  I think it may be really beneficial to her so we will see.  ;)

So, I survived the 2 appts I was dreading this week & they ended up being better than I anticipated.  Tomorrow during PT, Autumn is being fitted for a wrap thing that will help with her core strength in sitting.  She also has a neuro follow-up & then we will be done with appts this week.  Tuesday she has SB clinic which will be interesting I'm sure.  Well, this momma is exhausted & it's time to relax & wind down for bed. Goodnight.

Thinking of him...

Today I am thinking about my future son even though I have no idea who is he.  I know he will come to us in God's perfect timing but a momma's heart feels empty & aches knowing he is somewhere out there just waiting for us to come get him.  I think about him ALL the time.  Will be have white, brown, or black skin? Will he be tall or short for his age? What color will his eyes & hair be?  How old will he be? What hurts & challenges will he bring? Will he be shy or outgoing?  Will he be affectionate or have his guard up?  Will he be a momma's boy or a daddy's boy?  Will he talkative or quiet?  I can't wait to find out all of these things!  This process has not been easy for me because I am not patient but it has been good for me.  It's made me strive to be a better mother to my kids now.  I've learned so much from the books I've been reading & learning to parent in more effective ways.  It's called me to pray numerous times in the middle of the night for peace & patience.  I've been given the chance to learn about different all these different boys we have looked at & to just pray for them individually.  Everytime I see one of the faces of the kids I have bookmarked on the TARE website, I know one of those could possibly be my son.  I pray over each & everyone of those faces everyday.  They aren't just numbers or statistics anymore, they are real kids who have been through more than I can ever imagine.  It breaks my heart everytime we have to turn down a kid because he has too many "issues".  We have to do what is best for our kids & make sure we protect them so there are some cases we know we can not accept.  It still makes it hard because we know with each no it means a child will wait longer to find that perfect matched family.  I know it's best for both us & the child in the long run but can't help to be sad for having to say no.  I know this wait time is being used to strengthen our family dynamic so we will be ready to parent an abused/neglected child.  It's going to be the biggest challenge we will face as parents & God is preparing us to be able to handle those challenges.  So, in the meanwhile, I will daydream of what my son will be like & pray over him & many other boys daily.

Not a match

The selection meeting went well but we learned the child has too much aggression for our home. Our caseworker pulled us from the running because she knows we do not want an extremely aggressive child in our home because we need to make sure our 3 kids are safe & protected. I am thankful she made the decision for us but sad he still has no home. I know at least 1 other family also pulled out too. I feel peace about it because I gave it over to God to decide & He did. The waiting continues.

I took Gage back to the dr today to recheck his thyroid. Levels still look good but growth is still slow. We go back in 4 months to do more lab work to look at both thyroid & growth hormones again. She is also ordering another hand x-ray to look at his bone growth. She is still pushing for growth hormones so he will grow to his full "potential". Whatever. At least we have 4 more months before we have to deal with that issue.

Surgery & Selection Meeting

Autumn update: I took her back to the ENT dr to have her hearing re-checked to see if she still had fluid in her ears from December.  Yes, she does.  This means she is getting tubes put in May 10th.  She will also have a sedated hearing test done at the same time to really see how much she hears since she does not cooperate for a regular hearing test. I am curious how long fluid has been in her ears and how tubes is going to help.  For all we know she could of had fluid for ears, it was only caught by the machine they use to measure sound waves and her wave is completely flat because of all the fluid.  I wonder if this will help with her balance & general focus on activites...will be interesting to see.  This should be our first day surgery where we won't have to admit her if she wakes up just fine.  ;) 

She finally had her feeding evaluation so we are waiting on approval for that & an opening in therapy.  I need to call today to schedule her swallow study so the therapist will know what's safe & not but for now we are going back to the basics of just trying to get her to tolerate things touching her mouth & her touching textures. *sigh*

Insurance is being a pain.  James' work changed providers this year and they are denying things like her back-up ventilator & nursing.  The reason for nursing denial is because we only are requesing 98 hrs/wk and since we are trained, it shows that any lay person can take care of her without needing nursing degree, that is their argument anyways.  Nevermind we went through intense training for 2 months in the hospital to learn how to take care of our daughter properly.  I will be appealing the decision.  Good thing is Medicaid is secondary and they will continue to provide our nursing hours but I feel insurance has a duty to provide the services since we pay high costs for it.  Autumn requires a nurse for school and we need rest.  I could go on & on but I won't.  ;)

Adoption update:  We received an e-mail yesterday saying we have been selected as 1 of 3 families for a certain little boy.  This week they will have a selection meeting about it.  In a selection meeting the CPS caseworker, CASA volunteer, & foster parents meet with the adoption caseworkers of the families selected.  They give the information about the child & the adoption caseworker presents their families in greater detail.  They discuss who will be a match & then choose their 1st choice family.  If we are chosen, we will receive all the detailed history about the child and decide if we want to proceed.  It's so exciting!  So, we are in prayer this week that God's will be done.  He already knows which son is meant for us & so we are placing all of our trust in Him.  I will keep you posted!