Vent clinic update

Autumn was sick last week, running 99-103 temp for 3 days. It was all respiratory so I started her on some antibiotics & it did the trick. So glad our drs always make sure we have all the nebs we need so we don't have to take her in everytime she gets sick. Today she had vent clinic so I was curious to see how chest x-rays would look. They looked perfect!!! Yay! Her blood gas was perfect as well. We discussed her sleep study. She defintely still has severe central apnea (she averages 6 episodes every hour). The good news is she recovers on her own & we can continue to move down vent rates. At the study they had her on no rate but we know she needs some rate so we are going to keep her at 8 bpm. Her dr wants us to watch though if she is riding the vent or taking breaths in between. If she is riding the vent, we have to move the breath rate up again. This would be bad because she HATES having a breath rate & will pull her vemt off at night until we dial it down. He did change her i-time so the breath given by the vent will be a bit longer so hopefully a little bit longer breath would keep her from desatting when she has an episode but most episodes are mild & her sats do not even drop. We are also going to monitor her VTE (tidal volume exhale) for a couple of nights so he can see what needs to be adjusted. He may change either pressure support or pressure control settings so they will not bother her. We may have to end up stayong a night or 2 at the hospital for observation so we can get the setting just right for her but hopefully we can do it by us watching the rates at home & letting them know & they can adjust as needed. She had gained 4 lbs in 3 months!  They said it was a faster gain than they wanted but we are keeping her feeds the same & we return back in 3 more months.  So, overall everything seemed good at clinic.

Lifting weights

Lately I have been waking up every morning to a stiff, aching back, neck, & shoulders. I know it's from all the physical demands of Autumn & her equipment. I got curious so I decided to weigh it all.

Autumn: 22 lbs.
Ventilator with battery: 20 lbs
Suction machinr: 9 lbs
Pulse oximeter: 2.5 lbs
Backpack to carry Dynavox/braces/shoes: 13 lbs
Oxygen tank: 5 lbs
Cart for supplies: 8lbs
Wheelchair with emergency supply backpack: 30 lbs

That adds up to 109.5 lbs that I load up at least once a day for 5 days a week. Some days it's more than once depending on how many appts or places we are going. This does not even count how many times I am picking up & transporting Autumn from the floor to her bed to another room to her wheelchair to her stander to the car along with her suction machine & pulse ox that is always attached to her. Carrying Autumn is not like carrying any other 22 lb. toddler. She's like dead weight that hangs...actually she pulls your ears, tries to claw your face, or throws her body completely backwards while you carry her & her pulse ox machine.  The scary part is knowing she's only 3 years old & is just going to get bigger & bigger.  James already has a bad back so I really can't count on him for the future.  I guess it's time for me to start seeing a chiropractor to keep my back healthy to be able to keep up the demands to care for Autumn.  She's totally worth it though...all 109 pounds or more of lifting I do each day so she can have a "normal" & functional life. ;)  I so love that girl!

Easter Weekend

Good Friday the kids were out of school for the day but Autumn had an eye appt. that morning.  Dr. said vision still looks good but he could tell she is favoring her left eye over her right one.  He said for us to start patching the left eye for an hour a day to help strengthen the right one.  I am not sure how Autumn will react to that but I guess I find out as soon as I remember to get a patch.  ;) 

After the appt. we came home to color Easter eggs with our cousins.  Autumn swung in the swing while the kids colored eggs and at the end I tried to get her to put some stickers on an egg.  She hates stickers and wanted to just throw the egg on the ground.  She then fell fast asleep in my lap so I would stop the torture!

 Later that evening we cooked out and then hid eggs for the kids.  Autumn HATED that as well.  I put her in her wheeled stander but she cried & turned blue the entire time so I finally took her out.  I then attempted to sit her in the grass and she freaked out feeling the grass and cried more.  I guess it turned out as a bad day for her. We did however manage to get her to play with the fake grass in her Easter basket and she actually enjoyed pulling it out and putting it back into the basket so that was a HUGE step for her.

 Saturday morning we went to a park to have an Easter brunch & egg hunt with our life group at church.  I was afraid Autumn would cry the entire time because she's not a big fan of being outdoors but she did great.  There was a baby swing that I was able to push her in, she loves swinging!  It was a beautiful morning with perfect weather. 

We attended Easter service at church that evening.  On Sunday morning the kids opened their Easter baskets & we spent the day in our pj's and doing our weekend cleaning.  Gage woke up Easter morning and had lost his very first tooth.  I took a picture but only on my ipad & can't get it to post on my blog so you will have to check out my facebook to see it.  The weekend was fun time with family but the best part was remembering the reason we celebrate Easter in the first place.  Christ's death & resurrection for us.  Gage & I took the time on Thursday night to watch The Passion of the Christ.  I had to fast forward some of the parts since I think some of it may be too scary or bloody for him to see but wanted him to see reality of what Jesus went through for him.  He is not one to sit still through a movie but he was very intrigued by it & I had to read the entire movie to him.  He would also ask questions & I think it helped him understand more the meaning of communion & what it represents having the visuals.  My prayers for my kids is not only to have health & happiness but most importantly to become children of God.  I want them to know Christainity is more than believing God saves you from hell but to understand it's a relationship that changes everything about you. I want to see them produce fruit from their faith & to understand NOTHING can overcome them if Christ is their savior. 

SB Clinic

Last week Autumn had her 6 month SB Clinic check-up (which has actually been a year). Clinic is long. You see the nurse, the dr, ortho, PT, OT, dietician. It is almost getting useless for us because Autumn is constantly being seen by specialists but they do help as the experts to put all the pieces together from all the specialists when needed. Thankfully, Autumn has been doing well so we really did not have much to cover. The main thing was for us to get contacts to get Autumn a bath seat & medical bed. She will be outgrowing her current stuff pretty soon so we need to get the long process going. Not much happened during clinic to update on. After clinic we had to go she family service to get us set up with a vendor for the equipment I requested. We then headed to lab to get like 8 vials of blood taken to check renal functions & latex allergy & all that good stuff. We then headed to ortho to exchange her wheeled stander for one that fits her better. She got too tall for her last one. ;) Our wheelchair company met us at clinic to "fix" her chair but brought the wrong size laterals on her chair so the PT called the owner to complain about it & to get us the correct parts ordered. She's using the wrong laterals right now & it working ok until the correct parts come. She is happy to have some independance back. :) We have an eye appt. Friday & then should have a break from appts until the end of the month. Thank goodness!!!

Adoption update: things had been quiet lately. We've been submitting our homestudy off but had not been getting any information back. We finally got info on 2 more boys at the end of last week. One we declined on & we are currently waiting for more information on the other one. I'm more at peace & less impatient about it lately. I'm learning to release the "control" & trust in God's timing & not mine.

Lastly, Madison has been sick lately. She was negative for strep & flu so I think it's just a cold. She's had a stressful last 2 weeks so I think it caught up to her. I think she almost over it. Gage has his first loose tooth so he's excited! Only took him 7 1/2 years but better than me who did not lose my first teeth until the 4th grade & even then the dentist had to pull my top 4. We have solid teeth ;) I will try to remember to post a picture as soon as he looses it.

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.