What a difference a day Makes - Living with Spinal Muscular Atrophy Type 1

Yesterday, was a good day for a change of pace this week. I actually left this house and walked on over to the nursing home. Breathing in the spring air was great. Feeling the grass  and dirt soft under my shoes and seeing the flowers popping up all over was like a awakening and rebirth. I love nature.... I love Spring.I needed this walk.
I had the meeting on Mom's care and had my step-father go with me.  Dr.Schroth had mentioned to me in Madison when I told her about my mother and the Shingles about Lidocaine patches for her. I talked to her care coordinator and she said she would take care of it on Monday. Well, today they said Mom had been on them and was doing well. The meeting went well and we all have the same goal to focus on Mom's pain as number 1 priority.
I could not handle the colorless room mom was in so I had Christen take her in a different bedspread and comforter to add some personality to the room.You can not heal if you do not have a positive room with color. Mom looked better than I had seen her in years!! She had her hair done by a beauty shop inside the nursing home. I felt so much better since I saw her and talked to her. *Sigh* of relief. I can handle this new responsibility  yes , I  can!  I can do anything!!!  She is being well cared for now. Life is good.

I came home with a determination to get Lizzy well. I said" Lizzy enough is enough!!" I told her" we were doing a few extra treatments to get her better and No more fighting me!!" . I said " Lizzy you will get better and we will start now!! No more whining  we are getting you better". I did a extra treatment with nebs, IPV and got tons of thick gunk out of her. She was off bipap till 8pm last night and I asked her if she needed to go back on she said" No" but I said "lets take a break and put her back on". She is doing great today. I have a total different out look on things again.  I am me again. I do not like feeling the way I was..... self pity...... not worth it. Not me. I was time to forget about those negative forces fighting against us and do what we need to do to .

"We believe in miracles because we live with one!"
Have a great Easter!!
www.our-sma-angels.com/elizabeth

There is something good in Every day- Living with Spinal Muscular Atrophy Type 1

Lizzy wanted to call the Easter Bunny directly. She said" I NEED to talk to him!" Being 7 and half I am thinking its time to tell her the Easter Bunny is make believe. But.... do I want her to bring her out of believing in magical things? I was younger than her I found out there was NO Easter Bunny. Hmmm what to do?

Lizzy has had  her good days and bad days this week. She was off bipap till 10pm last night and today she was on it around 1pm. I feel like I am not doing enough to get her well. Is she going to be weaker or is she just this way until she heals completely? I over think everything in her care right now. Am I doing enough? Am I patient enough? I am not used to her being like this and I feel such a failure these days because she is not totally recovered yet. I asked her what is going on and she said " I NEED my BIPAP NINA."

I try to stay positive but it seems I am having a hard time lately . Its feels like I am chained to my house right now and the walls are closing in. I pray to get me through this tough time but it seems I am not feeling any better after being home. I swear I am not selfish and all I do is want to care for Lizzy. No one is giving me a break here. Its like I have always have been right there for Lizzy but I am feeling emotional these past few days and I do not know how to stop it. Its like I don't want to leave her side but its like I can not breathe. I feel so guilty and helpless feeling this way. I love her so much but her whining and fighting me on treatments is wearing me out. I need some positive energy here. I think there is many factors involved responsible for these feelings.  Paul still is not working yet e so I am worried about that. I also have a "Care Plan" tomorrow at the nursing home with my mom's care team. That is also been hard on me. I know they say God never gives you more than you can handle but... geesh I think he trusts me too much these days!

There has been a few things going on with Lizzy's dad that makes me crazy too but I should be used to that. He does things to get me upset daily when he is around.  He torments me. Christen ignores it or says Mom Get over it.. But you know I have gotten over it enough and its time I have others back me. I just do not want him around so much. I do better with out him and me in the same room. He is so negative all the time that he sucks the positive energy right out of me and everyone around him. Lizzy does not need that.  Sorry, I had to vent.. Yes ,I have forgiven him many times and he always goes back and does the same thing . How can you keep forgiving someone that keeps repeating the wrong that they have done. Yes, I pray for him every night. I usually do not bring him up in posts but I feel so much better venting about it. Its a constant battle with him.

Maybe,  I am just plain tired. Maybe, I will get over this "Hump" in my life right now. Maybe, I will just start walking like I used to and clear my brain every night if Spring ever decides to get here. One thing I will NOT do is give up on Lizzy. I know she is struggling right now but she is  fighter and she will get through this and be stronger. I know she will.

"Every day there is something good in it"  I just need to remember that. I have so many great people in my life I should remember that too. Keep sending those prayers. We need them.

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Home Never Felt So Good- Living with Spinal Muscular Atrophy Type 1

Home...... " sigh" Thank goodness.The last  few weeks have been like we were in a different dimension or some one else's life. It was our reality but I do not ever want to go through it again. I spent a lot of time praying and crying. I aged so much these past few weeks. My girls all told me "Mom your hair...... its like it turned white,  color it!"  So, I did today and its purple. Actually, Christen did it for me. I used organic hair color. Yep, its reddish purple. Lizzy said " It looks like a strawberry Nina!" Any way, I might be calling my beautician to fix it! ! Life, is slowly getting back to normal purple hair and all. I have had company come see how Lizzy is doing since we have gotten back. Tomorrow, I will be able to get a bit more caught up around here.

Lizzy is still on bipap more than normal but that is okay. She has been going on  it about 4 to 5pm. So, she is off a lot. It just going to take time. She is moving good and is on her computer several hours a day. I notice some nose flaring around 4pm or so and tell her its okay if she needs some bipap time. She tries to push herself to stay off. She has been getting up around 8am and off bipap at that time so she has accomplished a lot in the little time we have been home.

We had some wonderful nurses at American Family Hospital In Madison. We started blubbering like babies when we left. Kim, Claude and Lynn were so good to Lizzy. The RTs were amazing. Working side by side with the RTS was a relief knowing they knew what they were doing. The nurses said" we were so easy because we did every thing ourselves as far as feeds and taking care of Lizzy." Lizzy got really close to Kim  one of our nurses. Kim sat with her at her bedside reading books, doing a spa day , the two tea parties and just treating Lizzy so special. Claude also another nurse treated Lizzy so special. We had Lynn at night and she also treated Lizzy so well.

DR.Schroth was like a saint the way she arranged for Lizzy's med flight and handled our ER staff here to have such a quick and easy transfer. DR. Schroth was on vacation and did all this for Lizzy. What a wonderful caring doctor she is. I have already known she is great but this was way" Above and beyond the call of duty" She even had me on the phone two days before Lizzy made a turn for the worse helping me make sure Lizzy was in the best possible hands at home.

 Katie Poole has a special place in my heart for meeting Lizzy right off the med flight in the wee hours of the morning. She let Lizzy call us from her phone after she landed while we were on the road. She said " Mommy I am here. Katie is with me and I am okay!" I lost it when Christen repeated what she said to her. Lizzy is loved for sure by many. Our friendship with so many in the SMA community is just breath taking. The cards rolled in, the balloons, gifts, phone calls, two times we had  friends bring us supper. We even had a few friends stop up to check on Lizzy. I felt the strength of prayers surrounding Lizzy and also giving me strength to help her get through this. I have been known to be a bit clairvoyant at times but to feel the strength of words the prayers and feeling so many praying for her was undoubtedly the miracle that helped her get her through this bad illness besides her determination to live. Its like I could feel the words of the prayers. I could just go on and on about what wonderful people we have in our life that  are in our extended family. Thank you all so much!!

Now, I need to talk to my mom who is a block away at a nursing home and make sure she is doing okay. Its been hard to help her when my focus has been Lizzy. I still kept up what was going on with her and the social workers called me and updated me and my sisters. I am the one that makes Mom's medical decisions now and it the scares the heck out of me I am responsible for Mom's well being too.

Paul is still not working yet but waiting for the call any day to start driving a semi . They are waiting for the contract to come back through and he is in. Its harder than heck getting through this past year but the last few months after his total cut off unemployment has been the worst. Then..... Lizzy's illness. I think I have grown some "nerves of steel" or" brass ball"s because we have gotten through this all and we are okay. Its not been easy with added EXTRA stress ( which I will not go into) besides everything else but I have to say" Yeeeeees we are OKAY!!"
Now my diet starts AGAIN for me. I ate so much while Lizzy was in Madison I was worried they were going to have to "Roll my chunk hiney" through the doors. OMG.... It was unbelievable how much a stress eater I am.
Lizzy amino acid profile came back and it was fantastic. She was a bit high in glutamine but that was it!! The residents had a few others circled on the report but..... they were looking at the wrong values.They were looking at baby less than a month old. Wrong column.  So, I must know what I am doing as far as Lizzy's diet. I looked it over a few times and took a deep breath in and was relieved even during a terrible illness she was good.

Thank you again for all the prayers and just everything. Love you all. Thank you for being in my life!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Blowing this place!! - Living with Spinal Muscular Atrophy

We leave for home tomorrow!!! WHOOOOOOO HOOOOOO. Doing the happy dance here!!

Okay , how do you put 30 helium filled balloons in a dodge caravan and get home? Lizzy wanted to take all her balloons home but for safety purposes we are donating the balloons to kids up here after they are sanitized. Can you see us trying to drive with a van full of balloons. Not likely!! LOL

Its been a whirl wind last few weeks. There were many days I did not sleep, argue with the attending docs, piss off the RTS and constantly pray for God to save our girl. I did not know if Lizzy would get through this terrible illness and still be the same kid that came through these doors the night we arrived. The part that hurts my heart is that this little girl had so much confidence in me to get her through this illness with out coming to the hospital. I wish I could of done it but I have to admit if we had not come here and DR.Schroth had not life-flighted her in I do not want to think of the what ifs. I aged 40 years in two weeks. Its been 21 days with RSV and now its finally OVER!! The worst illness ever that we have had to encounter with Lizzy.

The q-2 was treacherous but Lizzy is close to baseline again because of the RTS and their care with me at her side helping.  We wanted her intubated but they said no, that  it will be rough but she would get through this. they put the tool boxes with the intubation kit in Lizzy's room for peace of mind to us.  They said Lizzy did not need to be intubated. They took the boxes out of here last weekend after Lizzy turned the corner.
Lizzy had a tea party with her favorite nurses and PICU DR. Jake ( Lizzy said he is cute LOL) , and it was  so much fun for her. They all sat drank tea and Lizzy entertained them.  Kim was one of her favorite nurses besides Claude and Lynn. She liked all her nurses but these 3 she liked the best. Just a wonderful staff. She wants to take Kim home and have her sleep in Aunt Jessie's old pink room!!I need a "Kim" to help me at home. She has been so good with Lizzy.

I guess DR.Schroth is saying Lizzy needs growth rod surgery again...... *sigh* but we have to see the new ortho wants to do. We knew this was coming. In the mean time the new seating  for her chair is going to be picked up hopefully next week and her new TLSO.

Thank you to all of you that prayed, did some healing, sent positive energy, presents, balloons, brought food , phone calls, being my sounding board, brought supplies, help us with our stay etc and just for being yourselves. You are the greatest extended family ever!!

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

thursday 4/7 /2011 Lizzy update- Living with Spinal Muscular Atrophy

Update- Thursday

Okay , Lizzy had just a perfect night. Just awesome. She is on Q-3

Then, around 9am started another round of treatments . All of a sudden her O2 levels were dropping ... Then, Christen runs out of the room she was so upset while Deb ( RT) and I were working on Lizzy. Dropping O2s to the 50s, 70s heart rate sky rocking. She had a Huge stringy plugs that was cutting off all her air flow. I mean they were so long . God got me and Deb through this guiding our hands in getting this plug out. Lizzy turned blue 5 times this morning but she NEVER lost consciousness. We did it !! We got it ALL out and Lizzy says she knew we would get it and she was not scared. Can you believe she said she was not scared? ( Tears flowing right this second) It seemed an eternity.

So, now she is sleeping doing well. I had to sit with a blanket over my head to get myself composed and do some direct channeling to that divine source that gets me through each day thank again for the miracle that just happened.

I am going to come out of here stronger minded person than when I arrived.

Thank you for the prayers keep them coming.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Lizzy update 4/6/2011 - Living with Spinal Muscular Atrophy

Lizzy still can not be lower than 25%. O2 Struggles when she is off O2. DR.Schroth said a few hours ago she is not ready. She also said" we will not be out of here for at least another week". Lizzy has to be off Bipap for 4 hours to go home and well. Which "Sigh" is upsetting but I am not taking her home until she is well. So she is right. I just want to go home you know?  This strain of RSV is brutal. I slept for 5 hours off and on and I feel that was a mistake because I feel so tired today. I do better on a few hours sleep. Lizzy will NOT let me leave the room.Which is ok. She needs me right now. She is such a little fighter!! 

Lizzy had an okay night.Lower stats and higher heart rate than the yesterday afternoon but she is moving junk out of her trunk. X ray was better I guess yesterday. Her culture only had RSV which is Great no secondary infections.

She has her favorite nurse and RT. LOL Seven years old and requests people by name. Yesterday she said " Hey..... Just where is my doctor? " DR.Schroth was very busy yesterday and did not get a chance to see her. Lizzy barters with the RTS on treatments. " Just one more cough Please then my bipap!" No more suction!! I want IPV NOW!!" She makes everyone laugh and steals their hearts here.

Keep our girl still in your prayers. She is making progress but still pretty sick.

Thank you all for prayers, balloons, gifts , making us food,and just being there for us.

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Lizzy update -living with Spinal Muscular Atrophy

The power of prayer and miracles are amazing. Whoa..... unbelievable!!
Thank you all so much. 
Lizzy had a good afternoon. She is down right now to 25% o2. I do not want to toot my horn too quick but it seems maybe she is getting better!!
My mom is in Evenglow ( Nursing home a 1/2 block from my house) and is comfortable. 
My husband may have found a job! !
KEEP THOSE POSITIVE THOUGHTS AND prayers coming this way!!
"We believe in miracles because we live with one!!"




www.our-sma-angels.com/elizabeth

Two steps forward one step back- Living with Spinal Muscular Atrophy

Its been like riding on emotional roller coaster this past week.

Lizzy takes two steps forward and 1 step back. Breaks my heart to see what this little girl has gone through but on the other hand makes me beam with pride how she has gotten through it.

Yesterday, everything was going great and I expected this is the road to recovery . Then, she slid back again and bradyed again.

Last night, she was better but getting this junk out is unreal. O2 is still at 30%.

My mother is not well either. They are thinking its bone cancer. She is also in the hospital in our home town,

Its hard not to lose faith through times like this when there is so much going on but faith and believing in miracles is all I have.

Thank you my friends for being there for us.

Keep those prayers coming!!

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth 

Healing- Living with Spinal Muscular Atrophy Type1

Update- Sunday Evening

Lizzy is doing better again tonight. Had a few tough times this morning. Not going to go into details because I will get upset again but the main thing is that she is doing better now and No o2 drops this evening.Our family was here today and it was quite emotional day but rewarding. I could feel the love we all share for a beautiful miracle child that has changed all our lives with her sweet presence , spunky attitude, her determination to survive all the obstacles she has faced starting with her diagnosis and how she just loves us so dearly. How one child can change so many lives  is amazing!

Thank you for the healing prayers, phone calls, balloons, cards, gifts and just caring for our girl and us!!

Thank you my dear friends for being the best friends a person can have in good times and bad.

Draz Family-   you made Lizzy wiggle her hands,smile , and pivot her shoulders when she has not hardly moved in a week yesterday afternoon!!. Thank you more than words can express!!(( Hugs))

Keep the healing prayers coming!!

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

The Power of Prayer!!- Living with Spinal Muscular Atrophy

You all are such special people and so glad to have you in our lives. The prayers worked and divine intervention filled our inner beings and the room.

A few hours ago Bill the RT, Christen and I tagged teamed Lizzy. She said she could not breathe even being on 85% O2. She said her throat was full of junk and so was her nose. her left top lobes were full. Her neck was hurting. I rubbed her neck and then we decided it was time to get her better.

So, we three used IPV, coughs, Bipap mask with O2 flowing and suction. Lizzy barely can talk and directed us what to do. We got so much nasty thick stuff out and a plug in her nose. We worked on her for way over an hour.

She at this moment is satting 99, heart rate is now 112 and she is sleeping. Busted all the junk out we could get!!

She was so relieved. I am so very thankful for all of you and your prayers!!!!!

Thank you all so much!! I hope this is the turning point!! She has been sleeping for an hour!!

Keep those prayers coming because they are working!!

www.our-sma-angels.com/elizabeth
"We believe in Miracles because we live with one!!"

please pray for Lizzy - Living with Spinal Muscular Atrophy

bad morning . Please pray, light candles and have positive thoughts to help our Lizzy. NEED HEAVY DUTY OLD FASHIONED direct prayers to the divine source that answers them. Lizzy has to get through this.
PLEASE Help her!!