Journal History
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Saturday, January 3, 2009
Happy New Year to you all.
It was hard not having Skylar here this year. I am sure she celebrated with so many friends and family in Heaven.
I miss her so much still sometimes it is unbareable.
It makes me so happy that so many of you still think of her although a lot have never met her personally. You are such loving and great people.
Feel free to sign her other book at
ww.our-sma-angels.com/Skylar
Again, thank you all for the love and support.
Happy New Year!
Friday, September 12, 2008
It is so hard to believe that Skylar has been gone for 4 1/2 months. I miss her each and every day. More and more with each passing minute. I survive on the fact that she is happy and free in her new body.
Please visit her other page at
www.our-sma-angels.com/Skylar
Tuesday, June 3, 2008
Skylar Elizabeth.., Happy 8th birthday sweet, amazing, beautiful angel. My girl, my life, my hero, I love you so much. I miss you so much. I know you are having a great time today and today we will still celebrate your life here on earth. Make sure to keep an eye out for your balloons later.
This day is a very special day for me. You came into my life, not quite as easy as I would have like you to, but you still came and every moment of the long 37 hours was worth the wait. Your beauty and innocence lightened my life from the moment I saw you. Every minute of every day was so very special to me and I was so blessed to be your Mommy for as long as I was.. I whole 7 years 10 months 3 days and 4 days. Now I am blessed to be the Mommy of my very own special angel.
I know I say this over and over... but I would do anything to be able to walk to Heaven to get you, for just one more day.. One more day of holding you, flipping you, changing you, adjusting settings, listen to vent whispers, range you, neb you, cough you, suction you, paint your nails, kiss your head, listen to your voice.... to love you.
You are my everything Sky. You are and always will be. I have two of the most amazing kids ever. Daniel misses you too. Did you hear him sing Happy Birthday to you about 100 times already?
Gosh Sky.. I miss you and LOVE YOU SOOOOO MUCH.
I know you and the girls are celebrating all day, but if you could stop by your party here on earth that would be great. If not thats ok also.
I love you Sky...
HAPPY BIRTHDAY TO YOU..
HAPPY BIRTHDAY TO YOU..
HAPPY BIRTHDAY SWEET SKYLAR..
HAPPY BIRTHDAY TO YOU..
One long month and one long week..... Till we meet again.
Hugs and kisses to Heaven and back....
Monday, April 28, 2008
My beautiful angel Skylar Elizabeth grew her angel wing and flew home to God this morning around 12:23am.
She went very peacefully. She just closed her eyes and went to sleep.
The lost I have just face is going to be unbearable but I know she is in a better place running and doing so many other things she couldn't do.
Please light a candle in her memory today knowing she is now free of pain in her new body.
Thursday, April 10, 2008
Hi everyone... Sorry I have been so distant but I have been very busy with my girl the past few months, it is impossible to keep up.
I thought I would ask you all to add her to your prayers.
Sky was admitted 2 weeks ago with aspiration pneumonia. She was discharged a day and a half later but was still pretty sick.
Well, she is still pretty sick. We were at the ER yesterday and although her blood work is decent they believe she has MRSA again. They are waiting for her cultures but did put her on Bactrim.
She is not herself anymore and is having more bad days then good ones.
Her neb medications and cough absolutely are bothering her. She will be ok and then when we start her "routine" her SAT's are good but her heart rate shoots up to 160's sometimes up to 180's. It takes her awhile to calm down. I got done with her at 630 this morning and it is now 750AM and she is trying to go to sleep and her HR is still 140's.
I look at her and she just looks so tired anymore and I am scared to death.
So please just keep her in your prayers even if it is only one.
Love and Hugs,
Tracy
Proud mom to
Skylar SMA1, born June 3, 2000
and
Daniel SMA Free born July 25, 2005
visit them at
www.caringbridge.org/pa/skylar
www.our-sma-angels.com/Skylar
www.caringbridge.org/visit/daniel_lee
Wednesday, April 2, 2008
It took my a bit to update but I finally got to it. Better late then never I guess :o)
Wednesday night Skylar started not feeling well. Her O2 and HR were ok but there was just something not right with her.
Thursday morning her vomited really bad. She does have the nissen (stomach is tied) and she is fed through her jejunum so her belly must have been really sick. I had a feeling that she had aspirated but we kept an eye on her all day. By about 5 or so I could just tell something wasn't right at all. So I called the ambulance to come and get us to take us to the ER. They did all the usual things.. xrays but her scoliosis is so bad they are almost impossible to read, and the blood work which came back that her white count was elevated to 25,000 normal is 7,000-9,000 I believe or something close to that. SO we were transferred to Danville for aspiration pneumonia. She was all right but Friday morning I have never seen the stuff I did coming from her trach..GROSS!!
Saturday we had the labs drawn again and her white count was back to normal and all her cultures were good also so they let us come home. She still was sick and junky but I figured I could manage at home.
It has been a long week so far. Im up at night with her. I might get 4 hours of sleep if Im lucky. Monday night she spiked a fever and it was had to get rid of it. I called the doc and she put Sky back on the clyndomycin and it seems to be helping a bit.
So as of right now, she is still junky and sick. We have to cough her every hour or so and really keep on our toes.
Please keep her in your prayers.
Saturday, March 1, 2008
What I BELIEVE is true-
Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.
Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.
So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.
These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.
When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.
These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.
by Aron Moss
Wednesday, January 9, 2008
Well here's to another year I turned the big 3-0 in April. Skylar turned 7 in June. Daniel turned 2 in July.
Now it is 2008 and we still don't have a cure for SMA. I have seen so many children come into this SMA world and some leave it also. It is heart breaking.
Skylars best friend Kalair was the first SMA child I ever gotten close with. She was only about 10 weeks or so older than Skylar. She earned her wings in April of 2007. Ever since then I have never been the same when it comes to the reality of how terrible this disease truly is.
Skylar had a rough end of the year in 2007. I almost lost her 2 times. I even had to revive her once almost twice. It was terrible. Then she ended up with MRSA in her lungs and strept in her lungs and blood. Needless to say she was a very sick little girl. As usual though, she pulled through.
It made me realize although she depends on my, I finally noticed how much I depend on her. She is my life. She is everything I have known for the past 7 1/2 years. I would be lost without her, I'd be lost without her machine sounds.
Yet, life is good. God has blessed me with two beautiful children. They might not be perfect but they are beyond perfect to me. I might not have to average life of coming and going when I want to, but that's ok. I might not have everything I want in life, but does anybody? I DO have the love and support of my family, my friends who make me laugh, people to say hello to just because I CAN. I have a little boy who drives me nuts because he could do those things. I have a little girl who just watches my every movement because she CANT move. What she could do though is teach us all not to take life for granted. Be happy for what you have and make the best of it even of it sucks now and then.
I thank God she could do that for me every second of every day.
So that's my violin for the day.
Love is God.. Rev Run <--- anyone watch that show?? I couldnt resist!!
“We come to love not by finding a perfect person, but by learning to see an imperfect person perfectly.”
—Anonymous
Thursday, December 6, 2007 6:09 PM CST
Sorry I have been AWOL but I have been slowly trying to get back to my normal routine and gradually REALLY trying to put the trauma Sky and I have been though behind me. To tell you the truth I don't know why I am having such a hard time doing it.
Skylar has been good. It seems that she has her good days and bad days.
She was off her vanco for only 4 days when her broviac site started draining and her heart rate started to elevate. So we is back on it till Sunday and we go see infectious disease Monday and hopefully get it out. I was hoping it would last a bit so I could make sure she was stable enough and she wouldn't need it.
Her color is still a bit pale on and off and I don't know how long it is going to be when I am just not paranoid watching her every second waiting for something to happen.
I really appreciated all the prayers and concern for her the past few months. You are all so great! We love you all.
November 19th, 2007
UPDATES FROM THE SMA SUPPORT GUESTBOOK
Kim McAdams
skylerbingaling@yahoo.com
Monday, Nov 19, 2007
Hey, everyone. Quick Skylar Update: the docs just informed Tracy that Skylar *does* have MRSA. That is the staph growing in her trach/lungs, with the strep being in the bloodstream and the lungs/trachea. After 4 days of being in the PICU, they have finally "quarantined" Skylar and people can only visit wearing protective gear. Tracy was a bit put off by this, because people have been visiting her, including Daniel. She was told there should be no problem with that having taken place...she is assuming it's because Skylar has been on antibiotics for a good amount of time by that point. But she's still a bit upset that it took them so long to find that they were dealing with MRSA. Skylar is still very junky in the lungs, but they are talking about possibly sending her home anyway with Bactrim - before Thanksgiving. Tracy is doing all of her treatments anyway, so they feel it would be safe. They did perform the ultrasound today, on the heart, and Tracy is waiting to hear the results on that. She is saying, though, that if she were to bring Skylar home at this point, she would want to do so with a PICC (sp?) line...so that they have easy access. Tracy would have it removed as soon as Skylar is well, though, since her Broviac line proved to be a route for infection when Skylar has that in a few years back. Tracy is being hopeful, but cautious, as she knows that they are dealing with some serious stuff here. They are used to sending Skylar home a bit junky, with Tracy taking care of it at home, but the fact that Skylar has MRSA on top of the strep is concerning, and Tracy wants to make sure all bases are covered before she brings her home.
That's it for now. PLEASE pray. MRSA, alone, is not joke...and Tracy said you can still tell that Skylar is not feeling well. She is definitely still not herself...a bit better...but not herself.
Take care,
Kim
Liz Dutzy
kalairsmom@yahoo.com
Monday, Nov 19, 2007
Another quick Sky update. They will be starting her on vancomycin in just a few minutes. Please pray that this works and also that Sky does okay with the medicine. She has had it a couple of times in the past and she is actually allergic to it. The first time she had it she developed Red Man's Syndrome so the last time she had it they premedicated her with benadryl before every dose and she did fine. This time the doctor said they are only going to give her the benadryl before the first dose and then "see" if she is really allergic? Huh? I know that Red Man's syndrome alone is not serious and I did read online that it is most likely to occur after the initial dose so I guess that is what the doc was referring to. But it also says Red Man's syndrome can, in some cases, be an indicator of "hypersensitivity" to vancomycin and people who are truly "hypersensitive" are also prone to anaphalaxis which is VERY serious. Anyway, I told Tracy that she should insist they give the benadryl before every dose if that's what worked last time. And we should definitely all pray that this antibiotic will quickly kill this very virulent stain of staph and also the strep without any side effects. Also pray for the placement of Sky's PICC line (tomorrow) to go well so she can be home for Thanksgiving. Everyone is confident Tracy can do all of Sky's care at home (since she is doing it all except IVs already!), but if they can't get the line in tomorrow they will have to stay for another ten days. Please continue to say lots of prayers for Sky. Tracy said she will call with an update whenever they finally come talk to her about Sky's echo results. She thought they'd be in by now, but she's assuming no news is good news. Tracy and Skylar are one amazing mother daughter team, and they have so many special angels watching over them. I am confident they will be home in time for Thanksgiving, especially with all of your prayers. Thanks, guys! ~Liz
November 18th, 2007
UPDATES FROM THE SMA SUPPORT GUESTBOOK
Kim M.
Okay, so it's official...Skylar S. has both staph AND strep and it's in her lungs, which are still pretty junky (the strep is in the blood, but the strep and staph are both in the lungs). Tracy said Sky is still bradying when they try the IPV, so they are not using it...but the junk in the lungs is beginning to move, which is good, and she is satting at 98 and above, for the most part, which is even better :) The staph she has is resistent to penicillins (they did not say whether or not it is MRSA...which I asked, because the staph is a resistent form), so they are switching her antibiotics, although she seems to be responding well to the kind she is on currently. Body temp is normal and her HR is back to where it is, normally, as well. They are still going to perform the ultrasound on the heart tomorrow, because of the results of one of the EKGs, so please keep your fingers crossed that all goes well there, too. They are going to do another culture tomorrow, too, and then will go from there in discussing when she might be able to go home. Hopefully, that will be SOON!
I think that's it for now!
Kim
November 18th, 2007
UPDATES FROM THE SMA SUPPORT GUESTBOOK
You guys are totally amazing! You all have me in tears. I have to make this short and sweet because I dont want to be away from Sky too long. She is doing ok and holding her own right now. Her bacd cells were odwn to 17 from 27 and I think a normal is 2. Her whilte count is coming down also. We are going to do an utlrasound on her heart tomorrow. The first EKG looked as if she had some really lond word that I cant even attempt to spell but ut causes sudden death BUT the 2nd one looked fine. I reassure the doc that she came is septic and that could be why it looked that way BUT they are not ruling it out quite yet.
Ill tell you though, I am scared for Sky. The last few months have been rough and put alot of strain on her heart. She is a toally amazing girl who deserves all the credit in the world. Like Liz said, I did say that I dont know how much she could take but she just amazes me everytime she goes through something like this.
Ok I have to run.. Thank you all for the continued support and being there when I need you and your prayers the most.
Much love and thanks headed all your way. ~Tracy
November 17th, 2007
UPDATES FROM THE SMA SUPPORT GUESTBOOK
Kim McAdams
skylerbingaling@yahoo.com
Saturday, Nov 17, 2007
Skylar Update :) See the smiley :) Okay, so she's not out of the woods yet...but she's doing better. Sky seems to be responding well to the antibiotics, which is a good thing. She also has an infection in her trachea, which is where the bacteria might have entered her blood stream. She's really junky in the lower lobes, but satting 96 without O2. Tracy is trying to see if she can get an IPV to help out there, because she just can't seem to get the stuff out of there with just coughing alone. Skylar is also more alert today, following people all around with her eyes :) They still can't get a line in her...but they are doing blood checks with finger sticks. Tracy wanted them to do an amino profile, but they said they need a line to do that...so she's not going to push it at this point, because it's so obvious they still can't get a good stick on her for a line.
Sky's temp has varied...98-102 rectally, sitting at around 100 currently. Her HR has been more normal, although she is still bradying a bit during some cough sessions. They are doing a cardio work-up on her tomorrow, just to check things out there.
So, overall, Sky is doing better...not out of the woods, but better, which is a good thing. Hopefully, by tomorrow the infection will have cleared a bit more and things will be even better. Skylar is such a fighter...she hits hard and bounces back quickly...which can be both a scary and a good thing!
Please keep the prayers coming! Infections in the bloodstream are no joke...and people aren't completely out of the woods until the infection responds completely to antibiotics and is cleared out of the system!
Kim
Liz Dutzy
kalairsmom@yahoo.com
Saturday, Nov 17, 2007
Hi all. I didn't post yesterday because I didn't really have anything to add to what Kim said. But I will echo her and say that Tracy has sounded so much better and more positive everytime I've talked to her. We are all still praying hard for Sky, she's been thru a lot. But I think they are starting to see light at the end of the tunnel. They are now saying that Skylar has a strep infection in her blood, not staph. Either way, it is a nasty infection but the antibiotics do seem to be working already. Tracy was even talking about having them put in a PICC line so they could go home as soon as Tuesday or Wednesday and continue IV meds at home. Right now though we are still just waiting to make sure sure Sky doesn't get pneumonia. Her nurse told Tracy that if you or I had this blood infection it is pretty much guaranteed that we would have pneumonia, but we know how on top of the respiratory treatments Tracy is. Tracy and Sky have kicked many a pneumonia's butt and they will do it again (hopefully before one actually sets in this time!). They did write for the IPV, so they should be adding that to her nebs and lots of coughing soon. I think that's everything, atleast I hope so. Turo and I were napping when Tracy called so I was half awake talking to her and I hope I remembered everything.
Liz Dutzy
kalairsmom@yahoo.com
Saturday, Nov 17, 2007
Tracy said the first trach culture was growing strep, so she is pretty sure it is strep throughout, but the second culture should be back tonight to confirm it. I just talked to her again and confirmed that, I was too tired and brain dead when she called earlier to be sure that was what she said. :0) Sky is sleeping soundly for the first time right now (she'd been groggy yesterday but would fall asleep and wake up just a few minutes later, over and over again...) Tracy needs to rest too, but she is monitor watching instead afraid that Sky's heartrate will go too low. It was running her normal while asleep, 80's and 90s and dipping into the 70s but not lower than that. Tracy was just watching because the hospital monitor doesn't alarm unless she drops into the fifties. I told her to make them set it wherever she wanted so she could get some rest while Sky was! But she said she was going to go search for an Elmo tape to put in for Sky so she will hopefully wake up and then sleep tonight. Tracy said if she lets her stay asleep now she will be up all night for sure. I think that's all for now. Tracy actually said, "the prayers are working, but keep 'em coming!" It is SO good to hear things looking up for Tracy and Sky, they deserve it! Oh, Tracy did also say that she is having a really hard time getting the stuff out of Sky's lungs, so we should specifically pray for that too. Sky did not tolerate the IPV (she bradied) and she usually loves it so they are going to wait awhile before trying that again. Tracy has been coughing, coughing, coughing, and she said she thought that was why Sky finally passed out. She was done being messed with! Okay, I hope I didn't forget anything, but my son is screaming at me to come play trains so I'm a little distracted. I'll update if/when I hear anything different. But everyone please continue to PRAY and remember that no news is good news! ~Liz, mom to ^Kalair^ and Arturo
November 16th, 2007
UPDATES FROM THE SMA SUPPORT GUESTBOOK
Kim McAdams
skylerbingaling@yahoo.com
Friday, Nov 16, 2007
Skylar Update: Tracy just called and said that Sky's culture came back positive for staff...that has infiltrated the bloodstream. She's still on IV antiobiotics, so hopefully they will begin to take care of the infection soon. Sky is off of O2 and maintaining 96 and above. She has had one episode where her HR began to drop, but it came back on its own, although she has also "bradied" a bit during a few cough sessions, as well. Sky was really dry...but an hour plus on the hospital vent and added humidity has begun to work on her secretions, thinning them out, and they are beginning to pull out some pretty good plugs. Right now, she is a tired camper, so they are trying to let her rest a bit before they cough her again. Sky just really seems to want to sleep right now. Tracy is more hopeful, but knows Sky isn't out of the woods yet...until they can clear out the staff. I did ask if it's MRSA, but Tracy wasn't sure of that at this point. They will culture her again tomorrow to see where everything stands.
I think that's it for now. Thanks so much for the prayers...keep 'em coming!
Kim
Friday, November 16, 2007 1:53 PM CST
UPDATES FROM THE SMA SUPPORT GUESTBOOK
Liz Dutzy
kalairsmom@yahoo.com
Thursday, Nov 15, 2007
Please pray for Skylar Saranchuk!!! I just talked to Tracy and Sky had plugged and scared her mom very badly again. When we were on the phone Tracy had changed Sky's trach and had her on full oxygen. Her sats were up to 100 percent with all of that 02, but her heartrate was staying very low. There have been a few times lately where Tracy was concerned about how low Sky's heartrate was running, but they could never determine why. Earlier today I had talked with Tracy and she thought Sky was getting sick again or having a pseudomonas flair up. Her temp and heartrate were up and she was really "pulling" with every breath, but she was maintaining her sats at 99-100 on room air. Tracy was rotating motrin and tylenol and trying to get someone to come to the house to do bloodwork (to check for the pseudomonas). Oh, and Sky was also in need of a good BM again. That's all I can remember for now, but I'm sure Tracy will fill in the rest of the details later. Just please pray for Sky to be healthy and not scare her poor mommy anymore! Skylar Elizabeth, we love you SO much and I know your best friend is watching over you. We don't want to hear about you having any more problems, girlfriend! I can't believe we're only half way through November. I'm ready for this yucky season to be OVER already!!!
Liz Dutzy
kalairsmom@yahoo.com
Thursday, Nov 15, 2007
Quick Sky Update: They are at the hospital (local one) doing bloodwork to try to figure out what's going on. I'm guessing she will be on her way to Danville again here in a little while. They had her O2 down to 3 liters and she was only maintaining sats around 95 and now sounds very congested. The ambulance driver told Tracy that Sky sounded like she had pneumonia, but she didn't sound like that prior to the crash. So we don't know if she is more congested now because she aspirated during the crash or if "something" was just brewing and she was about to become congested anyway. Tracy had to get off the phone quickly to talk with the docs so I will update more later when she calls again. I am so glad Sky is at the hospital where they can keep an eye out for any scary heart issues, but I am praying hard that they can figure out once and for all what is going on and keep sweet Skylar HOME for the rest of the winter! Please continue to pray for Skylar's healing and also for strength for her mommy.
Tracy just called again while I was typing this and she just sounds so worried and scared. She kept saying how much Sky has been thru this year and how bad she looks right now and she just doesn't know how much more she can take. I reminded her what her amazing daughter went through when she was only one. For those who don't know, this child basically died three times and every negative prognosis you can think of she was given. But after she got past that first year she has done so well! I told Tracy we will all be praying HARD for them to figure out what has been going on with her so she can have many more years of being healthy and staying HOME!!! Please PRAY and while you're at it, say a quick prayer for all of Sky's needle sticks to go well. So far, they had not been able to get a vein yet at their local hospital. Ugh. Thanks, guys! ~Liz, mom to ^Kalair^ and Arturo and Sky's "Auntie"
Kim McAdams
Thursday, Nov 15, 2007
Tracy just called. She's waiting for Life Flight to take Skylar to Danville. She is understandably scared. Skylar's chest xray was clear, her lungs sound clear, her labs (for nutrition) were fine, her SATs are fine, her fever broke, she pooped while she was there...it's just her HR is remaining low and she is clammy, white and groggy (wanting to fall asleep) and just not herself. Tracy said they haven't been able to do a blood culture yet to see if there's an infection in the bloodstream, because they weren't able to get a line in...so they're waiting til they get to Danville to try and get a line in there.
Tracy said she'll call either Liz or me with an update when they get settled in Danville. Please pray for Sky. She's a fighter...but definitely needs our prayers right now. They need to figure out what is going on - so they can try and fix it and get her home!
Kim
Liz Dutzy
kalairsmom@yahoo.com
Thursday, Nov 15, 2007
Life Flight just finally came to take Sky. Tracy is driving there as fast as she can and will probably arrive about twenty minutes after Sky does. Please continue to pray. As Kim mentioned, Sky's fever broke, but now her temp is running low instead and also her BP was a bit low. She keeps having "episodes" where her heartrate drops dramatically and they have to bag her. She was holding 94-95 on 5 liters when she left with Life Flight. I have not heard Tracy sound that scared in a long time, they really need all the prayers for strength and healing you can spare! Tracy said she will call when they are settled. Kim or I will update whenever we hear from Tracy.
Liz
kalairsmom@yahoo.com
Friday, Nov 16, 2007
I talked to Tracy again about an hour ago. Skylar made it safely to Danville and Tracy was there with her. Things aren't a whole lot different. Sky was satting one hundred percent on four liters. She is very cold so they are just trying to warm her up. Because she is so cold and her BP is low they were having a hard time getting readings. At first they couldn't get a good read on her sats, but like I said she was reading 100 when Tracy called. They tried taking her BP while I was on the phone, but they were unable to get a reading for several minutes and Tracy finally got off the phone. The main thing they are doing for Sky right now (other than warming her) is giving her a large bolus of saline via IV. She does have an IV in, but they were not able to pull a significant amount from it the one time they'd tried and they didn't want to blow it so they were holding off on more labs for atleast an hour, until the saline was finished running. They are hoping the saline bolus will help her BP and also pump up her veins so they can find another vein and get all the bloodwork they need (to check for infections). I think that is all for now. Tracy just sounds so defeated and scared. The best thing we can all do is to PRAY for Sky's one hundred percent healing. Our SMA family has so often seen the power of prayer, we know that God can do for our babies what no doctors can. So please pray for Sky to be healed and for strength and guidance for her awesome mom and her doctors and nurses. I will update more if anything changes. I told Tracy I will sleep with the phone next to my head and the ringer on high tonight, but I hope and pray that she will not need me. We are praying without ceasing and hoping that those of you who BELIEVE as we do will be doing the same. God's Blessings to all our SMA family.
Kim McAdams
skylerbingaling@yahoo.com
Friday, Nov 16, 2007
Skylar S. Update: Tracy just called. They were able to get enough blood to do a culture and they are now waiting on the results. Skylar's body temp is up and down, but her blood pressure and HR are up...although she did have another episode last night where her HR dropped and they had to work to bring it back up. Sky is currently on 1.5 litres of O2 and maintaining 99 percent. They have her on an IV antibiotic that treats a wide range of infections until they know what they are dealing with specifically. They KNOW she has some type of infection, because her white blood cell count was 37,000, but they just don't know exactly what they are treating yet. Hopefully, they will know soon. They have also done sputum cultures, just to see if there is anything brewing there, as well. Skylar is really, really tired...but she *is* responsive. She just wants to sleep right now...and who can blame her really!
Tracy said that's about it for now. She was heading off to neb and suction her and said she will update later.
Skylar (and Tracy!) is SO amazing...and STRONG...but she still needs lots and lots of prayers. They don't know what they are dealing with yet...but hopefully they will soon, so they can heal her completely!
Kim
MORE UPDATES SOON AS KIM AND LIZ HEAR FROM TRACY ~ PLEASE CONTINUE TO PRAY FOR OUR SWEET SKYLAR ELIZABETH AND HER MOMMY!
Saturday, November 10, 2007
Sky was admitted to the PICU in Danville 10/25 due to an ileus (some kind of spelling like that). It is when the small bowel gets paralyzed. Since she is fed through her jejumium she could even eat! Soooooo, it was a long week of aggrivation but she is doing much better now. She was released November 1st. We had some issues with her heart rate dropping to the low 50's high 40's but she is back to her normal there also. I was scared to death because it seems like things are happening a lot with her lately. I had a lot of tears that week.
She missed her 1st holiday BUT we dressed her up anyway and she was spoiled rotten by all her nurses.
So when we got home, her J tube cracked. The doctor wanted me to change it while we were there but it was fine and I didnt want to stay any longer than we had to. So I think he jinxed me. So in we went again... This time was only for a day. BUT her tube change went good (she has to be sedated) and when she started her feed that went well until the 3rd hour. She wasnt absorbing her feeds. The doc asked if I wanted to stay but I told her that this has happened before and I will work with it at home. So as of now it is going well. Keepong fingers crossed.
Please continue to keep my girl in your prayers. It has been a rough season for her so far. I am just praying the worst is over for now.
Friday, October 5, 2007
Yesterday (Oct 4) marked the 7 year anniversary of Skylar diagnosis. That 7 year anniversary now marks a wake up call.
Skylar is fine right now but last night I lost her for about 30 seconds. Her nurse was giving her nightly nebulizer and Sky started alarming. After about 30 seconds, I went to check to make sure all was ok.
I noticed that Skys heart rate was dropping fast but her O2 SAT's were dropping even faster. So I pushed the nurse aside (poor lady) and started to work on her as quick as I could. It all happened so fast. All I know is I watched the monitor go lower and lower until it hit o for O2 and o for HR.
I remember just screaming "IM LOSING MY GIRL.. IM GOING TO LOSE MY BABY.. Then I remember screaming I LOST HER... MY BABY IS GONE!! She was gone. blue and grey and lifeless. I started CPR and then it FINALLY dawned on me to change her trach that maybe it was blocked (although there was chest rising). HOW STUPID AM I??? STUPID ME!!!!!
After changing her trach I did about 2 more cycles of CPR and she was back to 100% and a HR of 80's 90's. The ambulance came and we took her to the ER.. Her chest xray was clear and her labs were fine. So she just plugged.
We were there for about 4 hours and then we came home. She is her normal self now. I just laid in bed with her and held her last night. I thought that, that was it.
Skylar amazes me. I am so proud of her and all that she has done for me.
Im still crying thinking of last night, so please just go give all your little ones a big hug from me. We are lucky to have them still here and my heart is breaking even more today for those who don't........
Tuesday, August 7, 2007
Skylar had a GREAT birthday and birthday party. She was spoiled rotten. She had a nice little party and her friends from Kansas even came in to celebrate with her! It was her Aunt Liz and Arturo. It is was so GREAT to see them. It was sad however that Skylars best friend Kalair (www.our-sma-angels.com/Kalair) couldn't come to visit with them. Kalair earned her angel wings in April but we know she was with us in other ways.
As of the rest of June and July, for most part Skylar was great. She was hospitalized at the end of July due to GI issues AGAIN. She has her G/J tube switched out and since we got home, she is having issues of emptying her stomach. Thank God for the J tube (tube goes directly to her small intestine) or we would be in big trouble. They came to do an xray today to make sure the tube is in place correctly. If not we will have to get admitted again. We DONT want that.
So please say and extra prayer tonight for Sky. It was be appreciated.
Thanks
Thursday, May 31, 2007
It is so hard to believe that in 3 days my little girl will turn 7! God has blessed me.
Since Skys hospitalization she is much better. Not 100 ut better. She has come down with another infection. She starts new meds today. However, she is in good spirits. You never know when she is sick by just looking at her.
We are having a hard time putting weight back on. She lost about 4 pounds in the hospital. So we are working on that.
Angel Kalairs mom and brother are coming in to celebrate with us. It looks like rain for Sunday though :o( It hasnt rained in two weeks about, but now its going to! Bummer!
Thats all for now. I will update after Skys big day!
Thanks for stopping by.
May 3 - May 9 2007
May 3
Hey everyone...
Tracy asked that I please post for prayers for Skylar. They are getting her ready to be taken into the PICU at Danville. Skylar has been running high fevers off/on for the past few days...and has been running a pretty high HR. The fevers have continued - as have the high HRs - and now they are having a tough time keeping her SATs above 95. Her g-tube site is also really messy (and Skylar normally has a BEAUTIFUL g-tube site, very clear), so Tracy is not sure if something is going on there - and she has, somehow, become septic. They are also pulling huge "chunks" (as Tracy is calling them) out of Sky...so, they are taking her in for testing and hydration - so they can hopefully figure out - SOON - what is going on with her - so they can get her on the road to recovery! Tracy trusts the doctors in Danville, they have always worked *with* her, so she feels Sky will be in the best of hands there. Skylar is also such a fighter - and has come through SO much over the years - so we know she'll be fighting, as usual, and home SOON!
I know there are so many sick kids out there now - and we're praying for them all. Please just add Skylar to your prayer list. This big ol' beautiful princess will be SEVEN years old next month - and we want her healthy and happy - especially to celebrate her big day!
Thanks so much,
Kim
May 3
Hey, everyone...
I just spoke with Tracy...and poor Skylar is one sick little puppy (again, Tracy's words). Her sodium levels are low...and she has a bacteria coming from her trach that can often turn into a resistant strain. Her white blood cell count is pretty darn high. Her xrays were fine, although her SATs are sitting lower than normal - and her HR is still higher. Tracy is really glad they got her in when they did - because she feels it would have become a lot worse very quickly. So, please keep the prayers coming...Miss Skylar really needs them.
May 4
Hey all...
I just spoke with Tracy - and preliminary reports showed that Skylar has a staff infection...but she is responding well to both antibiotics they have her on currently. Her fever and HR are down (yay!) and they are working to clear her lungs of all the junk that is in there now. Skylar's g-tube site has caused some concern, though, as they believe that she has developed "pockets" where the food may be filtering into (as well as food that is seeping out of her site, causing an acidic reaction around the stoma) - and that is why she has lost some weight over recent months. They are working to see if they can figure out a way to rectify that situation. Overall, though, things appear to be on the upswing - and Tracy hopes they can be home soon!
Thanks so much for all the prayers...
May 6
Kim Just wanted to give you a quick Skylar update. I spoke with Tracy a bit ago - and she said that Skylar is hanging in there. Her white blood cell count is down now - which is good - so now they are dealing with trying to clear out the lungs, keep her SATs up and bringing her down on supplemental O2 (she is on a small amount to keep her SATs within normal range). They are also working on her digestive issues - to see if they can get her to digest more effectively. Tracy was positive, as usual (saying Skylar is acting herself - and really hanging in there during some intense cough sessions) - just waiting on recent chest xrays and blood work - and trying to figure out just what is going on in Skylar's lungs, so they can help get her well soon.
Please keep Skylar in your prayers - as she still really needs them!
Thanks!
Kim
May 9
WE ARE HOME FINALLY!! I love the people down in Danville but I love being home even more.
Sky had a bit of a rough night. I dont know if it was from being extremely tired but her HR was up and her SATs were down again. Once she fell asleep she was good.
She ended up with two colinized infection along with the psuedomonis osteopenia GERD and some name about her stomach. Her stomach doesnt empty as quick as it should. That is why we got the GJ (which I dislike very much) She did lose some weight which I have to get back on her
(Mary B I tried to call you a while ago, could you email me?)
Skylar went into the hospital exactly 2 years to the day on the 3rd (by the way HAPPY BIRTHDAY MADISON!!!!). I have decided that May was not her month!
Sky is so amazing and such a trooper as always. She shocks me all the time. Probably as much as she scares me. She is my fighting princess and she makes me so proud!!
Wednesday, April 25, 2007
On Tuesday morning at exactly 3 a.m Kalair Myrick earned her wings and flew home. Kalair was Skylar very best friends and had SMA 1 also. She was 7 years 2 months and 1 days old.
Kalair and mom Liz, were the first SMA family we ever talked to after Skys diagnosis. We were all the best of friends and Sky adored her. They would always "talk" on the phone together then get mad when Liz and I made them get off. They have helped me through so much with Sky. We even got the chance to be with them a few times which was a blessing since we live so far away.
She will be very missed.
If anyone would like to visit this sweet angel princess, she sites are
www.caringbridge.org/ks/princesskalair
and
www.our-sma-angels.com/Kalair
Monday, April 9, 2007
Well, we had a few nice days now it is freezing again.
Hope you all had a great holiday. Ours was good. To tell you the truth Skylar could really care less about gifts, she just loves the fact that she gets extra attention on holidays (as if she doesn't get enough) LOL
Sky has been doing pretty good. She still has her belly issues but they doc says they think now that it is a hernia in her abdomen and it isn't hurting her any. So we just need to keep an eye on it.
Her and Daniel did get out to get their pictures done.
Go to http://smilestore.picturepeople.com/my/images?tk=9d82b5e6-ab0e-4e65-9532-47d63c6506fd
to view them if you'd like. If you cant see them just email me and I will send you the link.
Other then that, a very good friend of mine (we were just like sisters) was killed in a terrible car accident on the 4th (which just happens to have been my bday) Is was very tragic and I am still in shock. Please keep her family in your prayers. Her name was Amber and she was only 26 years old. I am heartbroken over this and just pray for her soul to be happy and free.
Tuesday, February 20, 2007
Is the summer here yet??? Skylar has been battling colds and sinus infections on and off all season. She still has some GI issues that we really haven't gotten any answers for sure on yet. She goes for an upper GI in March. So we will see what that says.
We also made an appointment for the orthopedic to look at her scoliosis and get some braces made. Her feet are getting very contracted and they haven't been this bad in a long time.
That is our short update for now but we didn't want to forget to wish one of our VERY bestest friends Kalair Myrick (SMA 1) a HAPPY 7TH BIRTHDAY!!!!!!!!! Please go drop her some wishes at www.caringbridge.org/ks/princesskalair
We love you K!!! xoxoxoo
Sunday, January 7, 2007 7:10 PM CST
We had taken Skylar to Danville's ER department yesterday around 3 since our ER don't know nothing. after 16 hours in the ER we were sent home. Skylars potassium was extremely low and her sodium also. They gave her some IV for about 6 hours.
As far as her belly bulging off and on, this is what they came up with. Hr X-rays were good once again. They did the die test (don't know what its called) to make sure that her button was in place and that her food was going into her stomach. It was, so that checked out also.
She hasn't had a fever or vomiting in two days so that might have been a whole different issue (flu maybe?)
Anyway~~ They believe that since Skyls scoliosis is terrible (I don't know how bad last I know it was about 60 degree). Her spine is under her belly which is pushing the stomach up. What they think we are seeing is her stomach contracting (I guess all of our do) and that is the "swelling/bulging" we see off and on. I don't know if I believe this yet. She has had scoliosis since she was an infant. Why did this happen also after a g tube change and all of a sudden?
The good thing is that she WBC is good so there isn't any infection going on.
Any ideas yet?
My next ? for those who has dealt with it. When did your child get spinal surgery? Where did you go? how long was it? Much pain? Feel free to email me.
Thanks a ton!!!
Wednesday, January 3, 2007
Yesterday we spent at least 6 long hours in the ER and really got nothing accomplished. They did her blood work (which we didn't et back yet) and tried for a urine culture but could get anything from her. We did the whole X Ray thing it showed nothing..no obstruction/constipation. The doc said he believes it is only gas that is either pushing her large intestine which is pushing her stomach up like it is OR the gas is in her large intestine.
She vomited 2 times yesterday so maybe overall she just has a virus? We go next week to the GI doctor to see about her nisson and reflux issue once again!!
So far today she only had a fever in the morning. Her heart rate is down a bit and her O2 is better than it was yesterday.
Keeping fingers crossed that this will pass soon and she will feel 100% better!!
Tuesday January 2, 2007
Well we are going to take Skylar to the ER to get evaluated today. She has been sick off on and on for about a month now. Now there is a new issue. I believe it is a GI issue. Her abdomen will get rock hard and then as quick as it does that it will go right back down. It is hard to explain. She threw up again this morning (she shouldn't be due to the nisson) and her fever is off and on but controlled with motrin/tylenol.
If anyone has had this issue please email me directly (ses6300@aol.com)
Thanks!
Friday, December 29, 2006
Merry Christmas everyone and Happy New Year!
Christmas was good. Santa went overboard again. Sky really wasn't into it I think due to the fact that she is just getting over RSV. She was sick for about two weeks with it, and boy was that the pits! Like always though, she did VERY well with it. She makes her Mommy proud :o)
School is on Christmas break so there is nothing to report there.
So I guess as they say, no news is good news.
Be safe over the new year and please PRAY FOR A CURE IN 2007!!
Lots of love and hugs sent your way.
Thursday, December 21, 2006 6:55 PM CST
Well it looks as though Skylar has RSV. Dr Perez just called and from the look of the X-Ray and the way she has been dropping ect.. he said it most likely that's what it is. He was most concerned of her vomiting (she has a nisson) so once she gets back to her ol' self, we are going to go have that checked. She had it checked last year and it was fine but so much could change in a year as we all know. So there is not much we could do for her but cough cough and more coughing. Thank for keeping her in your prayers!
Monday, December 18, 2006 9:45 PM CST
I've been holding back because I wasn't quite sure what the heck was going on, but Skylar is sick.
As of Thursday she wasn't maintaining her O2 saturation and her heart rate was up. She wasn't acting very stressed out or anything but she acted like she was just feeling lousy.
Finally today she had a chest X-ray done and it came back that she has pulmonary congestion (fluid in the lungs). She hasn't had this ever. The only way I could think of that she got it was from a major cold she is just getting over.
As soon as I hear from the doctor in the morning (I didn't get the X-ray results back till tonight) I will be sure to keep you updated.
Last Christmas Sky was sick with Red Mans Syndrome, now this year its this.
Please keep her in your prayers.
Thanks
Love and hugs,
Tracy
Proud mom to
Skylar SMA 1, born 6-3-00
and
Daniel SMA free born 7-25-05
visit Sky and Daniel at
www.caringbridge.org/pa/skylar
www.caringbridge.org/visit/daniel_lee
Monday, November 27, 2006
Sky is holding her own. She still isn't back to 100% but doing well.
She did get a chance to go to Grammas and Grandpops for Thanksgiving! She loved it and had a great time. And boy, is she thankful for them! They spoil her rotten and she deserves it :o)
School is going well. Her teachers think she is one smart cookie and I couldn't agree more.
We are slowly getting ready for Christmas. The weather has been nice so we already put the lights up outside. I am hoping to get Sky out for a walk so she could go see them at night.
We finally got her bedroom done. It looks great. She gave the two thumbs up.
Thats about it for now.
Hope you all had a great Thurkey Day! I have been truly blessed to have Skylar here for her 7th Thanksgiving and I thank God for her everyday.
Saturday, November 18, 2006 2:05 PM CST
From the SMA Support Guestbook...
***UPDATE***
Hi guys, I just talked to Tracy again, and so far they are NOT in the hospital. Tracy said after we talked last they decided to keep doing Sky's treatments until 4 o'clock (about 45 minutes after I'd talked to her), and see if they could get any more "stuff" out. She said 4 o'clock came and Skylar was at one hundred percent and her fever was gone (praise God!), so they decided to hold off on taking her in. Tracy says there is definitely still some more "stuff" in there, but they are going to keep her home and watch her for tonight, and keep doing tons of extra treatments of course.
So keep the prayers coming that anything she aspirated does NOT settle into pneumonia and that she has no further reason to be admitted to the hospital. Tracy really doesn't want to take her in because they will get her all worked up again and possibly make the situation worse and also because she is likely to catch something nasty this time of year. So pray that the little princess will stay completely stable until her upcoming ENT appointment where they will hopefully be able to determine why she is refluxing and aspirating even with her nissen.
Thanks, guys!!! Tracy and Sky, we love you girls, and we will talk to you soon. Sending big (((HUGS))) and lots of prayers from KC to PA!!!
Earlier...
Hey guys...prayers please for Miss Skylar Saranchuk!
Tracy just called, and they are taking Sky into the hospital. She aspirated pretty substantially this morning, and they've been coughing her and doing her treatments for almost four hours straight already, but they just can't seem to get all the formula out of her lungs. Plus she has just started with a fever, so Tracy feels it may be settling into pneumonia. Please pray that she does NOT get pneumonia, that she has a safe trip to the ER, and to Danville if she needs to be transferred, and that she does not catch anything from being in yucky hospitals this time of year. Tracy is worried about that too, of course! Sky is stable right now. They had finally gotten her all calmed down and her sats up to 99, but her heartrate was still a bit high and Tracy could hear a bad "rub" in her lungs. So...they should be on their way to the ER now... Also I think they will be rechecking Sky's nissen, since this is the third time this month that she's thrown up. I will update again whenever I hear from Tracy again.
Skylar Elizabeth, we LOVE you, and we want you to feel ALL better SOON, sweetie!!! We are saying lots of prayers over this way.
~Liz Dutzy, Kalair and Arturo's mom, and Sky's "Aunt" Liz
Monday, October 16, 2006
Yes, I know it has been awhile.... It is hard to update when there is not much going on. That's a good thing.
Well, Halloween is almost here already, but Sky doesn't really seem to want to be anything particular. I was thinking of making her an angel since she is my good girl and Daniel the devil since he is a terror. :o) What ever I decide I will get some picture up.
With the weather finally changing, Sky has already gotten over one cold so far. Like last year, I am going to try to get them out for their Christmas pictures soon, before it gets WAY too cold for Skylar.
Sky has been very good to me. I hurt my knee playing softball on the 1st. I stretched my LCL and fractured my knee. Sky looked at me when I got home (unable to walk at first) and said..AHHHH. It made my day.
I guess I should conclude that Skylar has another baby brother Erik David. NO he is not mine, but Daves. He was born on Thursday and is already home with his and Skys sister Carly.
Other than that.. stay warm!!
Friday, September 8, 2006
Skylar had her ENT and pulmo appointments yesterday and did well. She loves getting out even if it is to the doctors!
Dr Perez (pulm) said she sounds great. He is very concerned about the flu this year and since Sky doesn't get the flu shot (by choice) he asked that I get it for Daniel. If I hear of anyone that has been around anybody with the flu he wants Sky on a med immediately.
As for the ENT, her trach site looks great. She does have a bit of granulation at the end of her trach. We have to keep an eye on that. Right now it is not significant but it is something to watch.
So she is good for another couple months.
She started 1st grade and still loves her teachers. They say she is a very smart girl. She must get her brains from her mom LOL (Only kidden Dave)
The only thing going on now is figuring out what she is going to be for Halloween. If the weather is nice, I am taking her out this year.
Thanks for stopping by!
Friday, August 4, 2006
Could anyone say HOT??? Thank God this heat wave is coming to an end. It has hit over 100 degree with humidity and I am looking forward to it being gone. Sky as well. We have the AC going but it is still pretty warm inside.
For Skylar Make A Wish trip we were going to take her to Disney but decided not to. The drive is too long and when we took her to South Carolina she wasn't too please with the 18 hour drive so I know she would be even more unhappy with a longer drive. If anyone has suggestions on what we could do please feel free to let me know. We were going to try Sesame Place (only 2 hours away) but she isn't that much into Sesame Street anymore.
Skylar is now in 1st grade. She has 2 new teachers and loves them! Thats a good thing. I am also going to look into Sunday school. With us being Catholic I dont want her to miss out on her first Holy Communion just because she is homebound.
She has her ENT appointment coming up as well as her pulmonology, so I will be sure to let you all know about that.
Lots of hugs sent your way!
Wednesday, July 5, 2006
We survived the flood of 2006! It is so odd to think that Wilkes-Barre was actually on CNN and all the other big news station. Wilkes-Barre and some surrounding areas did get some major damage and it is very sad.
We were lucky enough to be on a hill that the waters wouldn't reach. However, we did get some minor flooding in the basement just from the rain waters seeping from the grounds.
We got evacuated Tuesday night. That really sucked. they were going to shut off the electric and gas so we needed to get Skylar out. So we rushed around in very humid weather to get her out as soon as possible. Poor Sky never felt rain and it was raining SO bad she got drenched! She is such a trooper. She makes her mama proud ;o)
Sky has been doing good. She lost her top two teeth. Took her 5 years to get them and 1 year to lose them. She is now in 1st grade!! She started school today. Where did my little peanut go???
Hopefully Her and Daniel will get their pictures done next week. Keeping fingers crossed. Stay tuned!
Monday, June 12, 2006
Today was a very sad day in the SMA community.
Cassidy Swanson (SMA1) was laid to rest. She passed to Heaven on Friday at the sweet age of 9 years old.
Cassie and her twin sister Skylar was very muched loved by our SMA family. They are inspirations to many and will continue to do so.
I always held a special place in my heart for the Swanson twins. Dana (their mom) and I always said my Skylar could be the 3rd twin because they resembled each other so much. Maybe that's why I felt so close to them, I don't know. Maybe it is the simple fact that these two amazing little girls and my girl were a like in so many other ways. Maybe it is that these two amazing girls were just that...amazing.
Please pray for Skylar Swanson. She also has SMA. My heart breaks for her and her family. She and Cassie were literally two of a kind. They did everything together. Playmates, friends and so much more than sisters. What is she going to do without her?
SMA really sucks! It seems more and more of a reality when we lose another angel. Especially someone like Cassie.
It really scares me to pieces.
I pray God brought Cassie home peacefully. She is now running free with the other SMA angels in Heaven. Watching over her sister and the rest of her family.
You could visit Cassidy and Skylar at
www.believe-miracles.com
Please keep the family in your prayers. I am sure they need all they could get.
I will miss you sweet Cassidy. Thank you for being a part of my life. I will never forget you.
Friday, June 2, 2006
Although a day early, I wanted to jump on because I doubt if I will get here tomorrow....
My precious little girl turns 6 at 1:11pm, June 3rd!! I am so happy and thrilled and honored for this day to come. It is so hard to believe that she beat the odds for another year and I am sure there are many more to come.
Skylar, I love being your Mommy. All you have shown and taught me would never come out of a text book. Your will, compassion and zest for life amazes me everyday.
Your attitude, stubbornness and happiness is something I wouldn't trade for the world.
The happy moments, sad, scary, frustrating moments I will cherish forever.
Thank you for making me a stronger person, for helping me see the finer things in life, teaching me that life could be good regardless of limitations. Thank you for sticking by me at my worse moments and giving me the look that told me everything will be ok. Thank you for being you! My sweet princess. I love you peanut.. You and me forever!! xoxoxoxo
Sunday, April 9, 2006
Hello everyone!
I don't get on very often but I thought I'd send along an update.
Skylar is doing good. She just got over another sinus infection but as always she took it like a champ! She goes to see her ENT and pulmonologist this Tuesday. She is looking forward to getting out. It is supposed to be 65-70 degree so it should be a nice ride down.
Daniel had his first cold which then settled into a double ear infection. That was no fun!! He is a whopping 24 pounds. Only 5 more and he caught up to Sky. He is my 8 month old linebacker!
When both the kids got sick, of coarse I got it also. Mine ended with bronchitis!
We are all better now, my voice is almost all the way back, so things are good.
Herb lucked out and stayed sick free. He got me another ring for my birthday, so that was a surprise!
Last and most important. My mom found out she had breast cancer BUT is was at stage 0 and they got it all out, with no treatment needed. It was very small (the size of an eraser top) I am still a but nervous and want her checked again. Thank God she went for her mammogram! Be sure to go for yours!
That's about it for now.
Sending lots of love,
Tracy Skylar and Daniel
www.our-sma-angels.com/Skylar
www.caringbridge.org/visit/daniel_lee
www.caringbridge.org/pa/skylar
Tuesday, March 21, 2006
Things have been going ok with Sky. She does have a sinus infection right now but she gets them quite frequently.
She never did get to go to the birthday party. The nurse she was supposed to go with ran late. Sky was ok with it though since it was only like 10 degree out!
The weather was nice early last week so we took Sky out in her chair and now that is her new thing.. she wants to go out! The thing is, it is back to 30's and 40's so it is too cold yet. Where is the spring?!?!
Hopefully next week we are going to get her and Daniel out for thier Easter pictures. Stay tuned!!
A big thanks to MJ for updating Sky websites! Check out her other one also at
www.our-sma-angels.com/Skylar
Hugs sent to everyone!
Friday, February 17, 2006
Sky has been pretty good. She has had a few colds but since the trach was placed she overcomes them quickly.
Sky was invited to her first birthday party. She will be Mommy-less that day. Her nurse is taking her. My little girl is growing up :o( I am glad she is going though. I think it will be really good for her. I am sure she will enjoy it.
We are counting the days till spring!!
Tuesday, January 17, 2006 5:53 PM CST
Hello to everyone.
Sky has been doing good but our little buddy Payton has gone home to Heaven. Payton was a type 1 just 1 month younger than Skylar. They were so much alike. I havent heard what has happened but it doesn't matter. The fact is that SMA won again against a fragile amazing little boy. He was a true hero and his family has done so much for the SMA cummunity. He will be missed!!
Please keep the Freeman family in your prayers. Visit Payton at
www.paytonspals.com
This is a wake up call everytime God calls one of our angels on loan home. It scares me to death although I know one day I will have to face the fact.
We love you little buddy!! Watch over your mommy and daddy and be sure to give them lots of signs. Fly high and do the things you never could.xoxox
--------------------------------------------------------------------------------
Monday, January 9, 2006
Happy New Year to all!!
This was the 1st year Sky was sleeping at midnight so that was a bummer.
Christmas was good though. Christmas Eve was long though. Skylar spent 6 hours in the emergancy room. She was sick with a 102 temp (that is very high for her..she runs about 97) They did the chest xray and that was fine. Then they drew some blood and her white count was 20,000 (normal is between 9,000 and 11,000, somewhere around there) So they knew there was an infection. Then they did a blood culture and since Sky is such a hard stick they had to culture from the groin area..ouch!! Good news, no infection in her blood. It ended up being a virus and we had to stick it out. She was on meds "just in case". She handled it like a champ. Gosh she makes me so proud!!
She had a good time at Christmas. Lots of visitors!! She loved her gifts and loved helping Daniel with his. We had a great time.
Please keep our friend Madison in your prayers(SMA1 8 years old) She is in the hospital with RSV.
Tuesday, December 27, 2005
Merry Christmas and Happy New Year!!
I hope Santa was good to you all.
The kids had a good Christmas. Skylar is sick though :o( we spent 6 hours in the emergency room Christmas Eve. Friday (12-23) Sky woke up with 102 fever. Her face was redder than red. So I just kept my eye on her and rotated motrin and tylenol. That kept her fever down. When she woke on Saturday she was even more red so we called the doc and he suggested we take her to the ER to get evaluated. So we did. Her chest xray was clear, but her white blood count was up to 20,000 (normal is around 11,000-13,000) They had to do a blood culture and since she is so hard to get blood from they had to draw it from her groin area..ouch! Test came back though and she had no infection in her blood. So it was just a virus (5th disease) She is recovering and almost back to her norm. She still however enjoyed Christmas!!
Daniel was more infatuated with Skylar then his gifts. He loves to grab her cheeks (and her trach). After about 1/2 hour he wanted nothing to do with Christmas. I am sure by next year, he will be a bit more excited. On December 3rd, Daniel was diagnosed with pulmonary stenosis which is a heart condition. One of his valves is narrow and has to pump harder to get blood to his extremities. It is genetic and comes from his dads side. The good thing is that we found out early and Daniel will be monitored every month. If it continues to get worse he might have to get a balloon placed in the valve to stretch it open. We also believed he had Long Q-T but after further testing that was ruled out.
Overall, things are good. I have two amazing kids that I cant get enough of.
I hope 2006 brings many more happy memories for my family. Most of all I pray the cure will come so no more of our angels on earth will have to earn their wings.
Have a safe holiday season!!
Hugs,
~Tracy~
Mom to
Skylar SMA1, born June 3, 2000
and
Daniel SMA free born July 25, 2005
visit Sky at
www.caringbridge.org/pa/skylar
www.our-sma-angels.com/Skylar
Thursday, November 24, 2005
Happy Thanksgiving everyone!
Hope you all have a blessed day.
I have so much to be thankful for, especially that fact that Skylar is still with us for her 6th Thanksgiving. I never thought it would be true. Also for my little boy who so far is healthy (keeping our fingers crossed for his heart issues). My very supportive family. A boyfriend who loves my daughter as his own, who also gave my special little man and I am also thankful for Dave. If not for him, I wouldn't have my beautiful daughter.
To my SMA family who stuck through me through thick and thin. Without you all, where would I be?
To God.. THANK YOU so much for sending me my angel on loan. I pray you let me keep her for many years to come.
Monday, October 31, 2005
Well Sky is sick..
We thought something was starting last week so we cultured her trach and it came back today with psuedomonis AGAIN and staph AGAIN. Last time she had it we caught it early so she didn't even have signs to show any symptoms. This time we caught it a bit late. She has a fever. So far the highest was 101, she flush and very tired. They put her on Bactrum (sp?) and another inhalant antibiotic but they had to order that. So as of right now she is holding her own. O2 between 96-97% but a higher heart rate. Sleeping in the 120's and high 130's when she is awake.
Poor girl is so wiped out!!
Other than that she dressed as Raggety Ann today and Daniel was Superman. We got some really good pictures of both of them although Sky had that sick look. We didn't take them out due to Sky being sick.
As you could see, we went to get the Christmas pictures done early. That is the 1st time I had Sky in the mall since she was about 2. She loved it though. She was so good getting her pictures taken but Daniel was a whole other story.
Daniel was baptised yesterday. It was nice. He screamed when he was getting blessed. I really wanted to take Sky but it takes so long getting her out and about. If it was a few hour thing I would have taken her. I am glad in a way though since today is when her illness showed.
So please keep her in your prayers and HAPPY HALLOWEEN
Sunday, September 11, 2005
I know I am so far behind with things. It really is hectic having two now. They really like to gang up on me at times seeing who catches my attention first. Usually Skylar does since Daniel could scream his head off without going into respiratory distress. Skylar had an eye appointment last week. So for those of you with kids with the lazy eye... it doesn't necessarily mean they need glasses. Skylar has perfect vision. Her lazy eye is healthy also and the doctor
told me there is no concern for that eye to go blind. So that was good.
We also has the follow up to her trach surgery and they looked great to
him also. So it was a good week for Sky.
***TOUCHDOWN PITTSBURG!!** <--- Im watching the game as I type this!!
Daniel is growing like a weed. He is already over 10 pounds and he
thinks he has to eat 24/7. He is also gradually starting to sleep a bit more at night. He loves Sky to death and loves to give her kisses. Although when lying with her the other day he gave her a fish hook (grabbed her lip and pulled)
A very close friend of mine passed last week. September 3rd.. my grams
2 year anniversary and a family friends 1 year anniversary. Now my dear friend Jeff's passing. It was a hard week because I could never truly grasp the concept of death. He was only 31 full of life and his death was tragic and unexpected to us all. I will miss him very much.
Thursday, August 25, 2005
Its been awhile I know but adjusting to two children needing me at the same time takes up a lot of time ;o)
Sky has been doing well. She does have an infection in her trach. Staph, psuedomonis and strept. She showed no symptoms but Kim (her nurse) noticed a few that I didnt even know to look for. So we cultured the trach and thats what came back. She is on antibiotics for 10 days. She is almost done with them already and she still showed no signs of illness so that is a good thing. She is eager to get over it so she could play with Daniel again.
Daniel has been good. He doesnt like to sleep at night but other than that everything is ok. It is hard to believe he is a month already. I still cant get over the way he moves. Although I am beyond happy he doesnt have SMA, it makes me sad to realize even more what Sky has missed out on. More than sad it makes me mad. Sky is Sky though and she is amazing although she cant move.
Please keep Skys Grandpy Saranchuk in your prayers. He isn't in the best of health right now. He and I always remain very close and I hate he is going though this. I am actually able to get up to see him tomorrow (my mom with have Daniel and Kim Sky). Also my friend Jeff. He has been in a coma for almost 3 weeks with swelling of the brain. he has a virus in him that is causing this. He is only 32..so please pray he will pull through.
July 25th, 2005
Congratulations to TRACY, SKYLAR and HERB! Little DANIEL LEE FULLER III could not wait for his due date to get here!! Tracy was at the hospital with Skylar for an appointment...and she had a follow-up appointment, too (she's had gestational diabetes)...when little Danny decided that he couldn't wait any longer to meet his family. He was born at 2:22PM, weighing 7 lbs 1 oz, and he is 18 1/4 inches long. Danny IS pretty premature, so he is currently considered to be in respiratory distress and is on 100 2. They also detected a heart murmur (which they think is from going from womb to "here" and being in distress), but they think that will be okay. So, please say prayers that Danny progresses according to plan...and that Tracy and Herb get to see him soon! He was delivered by C-section and was whisked away because he went into respiratory distress. They are waiting not-too-patiently (of course!) to see him! Hopefully, that will happen soon. As usual, Tracy is dealing with all of this with her incredibly up-beat spirit...it's unbelievable!!
So, congratulations to Herb, Tracy, Skylar and Danny. His delivery may have been premature...but he is LOVED and has THE best mommy in the world, so we know he'll be just fine! He's just taking after his big sister...doing things his own way, keeping Tracy on her toes, and being FULL of surprises!!
July 26th, 2005
Morning update
Good morning all! I just spoke with Tracy and she was able to see little Daniel last night. They had weaned him down to 75 nd he was still SATting in the high 90's so she's waiting to hear if they've weaned him down any more by this AM. Tracy is doing well...and not complaining at all about herself, and the fact that she had a pretty darn difficult time the past few weeks...and especially yesterday! Her blood pressure is still fairly high (which lead to them having to take Daniel by C-section yesterday...her blood pressure was high and they couldn't stop her contractions)...but she was refusing pain meds (while we were on the phone!) because she says that she's feeling okay. LOL That's Tracy for you! Anyway, her concerns are more with the fact that she had to leave Skylar at home overnight - and now it's more than probable that she'll have to leave Daniel at the hospital for at least a week (he's on IV antibiotics). The docs, though, are saying if he continues to do as well as he has been doing they won't have to transport him to the Danville branch of their hospital, which is further away. So, that's good news...that he can stay in Wilkes-Barre, close to Tracy and Herb.
Man, aren't ALL babies MIRACLES?! It's just amazing how they seem so fragile but they fight like heck to get here!!
Tracy said little Daniel is short and chubby...and VERY cute, of course :) Herb is bummed that he missed the delivery (he was taking Skylar home)...but is just in awe of his little son...and is very excited to get him home, so they can be a family :) Let's pray that that happens REALLY soon!
Skylar, BTW, is doing fine. She had Herb and a nurse stay with her last night. Herb is with her this AM...and her FAVORITE, SPECIAL nurse, Kim (kinda like that name...LOL!), will be there this AM so that Herb can go be with Tracy and Daniel.
That's about it for now. Tracy doesn't have a laptop at the hospital, but I'll definitely update if anything comes up!
Afternoon update
Tracy Update. Well, the sad news is that they moved Daniel over to the Danville Hospital, so he and Tracy are in two different hospitals. His CO2 levels were all off and they want to do chest xrays to see if he has fluid in the lungs. If so, they might try inserting a chest tube. They might also try CPAP...and if that doesn't work, then they might have to intubate him for a few days. Tracy was calling over to see where things stand, and how little Daniel is doing. Tracy is obviously upset that she is separated from him, and that she will be in the Wilkes-Barre hospital until Thurs or Fri while he is in Danville. Herb took the rest of the week off...and he is going to Danville to be with Daniel tomorrow. They are all just amazing...and Tracy's incredible spirit never ceases to amaze me...
Please pray that all goes well. The docs say this can be normal...so please just say prayers that they are all home...SOON...together!
Evening update
Daniel is doing well. He does have an air pocket in one of his lungs...but the nurse in Danville says he responding well to the O2...and is pink and sleeping with his binky :) Good news...!
July 27th, 2005
I spoke with Tracy tonight and baby Daniel is now on 30 2 and Herb and Herb's mom went to visit him today (just in time to see him poop EVERYWHERE! LOL). Tracy will be discharged tomorrow...and has been given the go-ahead to go to Danville to see Daniel!! They are going to monitor Tracy's sugar levels tonight, however, because she still seems to be having issues there. Hopefully, everything will check out okay. Skylar is doing really well...and Tracy was so relieved to hear how impressed her mom was to see how well Herb takes care of Skylar. He has learned how to bag, suction, and do all of her treatments...and does it all without panicking, so that is SUCH a relief!!
Daniel will be in Danville at least until Monday, so I will update if I hear anything more!
July 29th, 2005
Daniel Update: Daniel has been off of O2 since this AM! He is having an upper GI done, because he has been vomitting green stuff (sorry!), so they need to await the results there. Tracy was able to hold him yesterday, so she was really happy about that, of course :) He is expected to remain in the NICU until early next week, pending the results of the GI study...and whether or not they can begin feeding him soon. He is coming out from under the lights tonight, too, because he has had jaundice. But overall, Daniel is improving...and that is VERY good news!
August 1st, 2005
Baby Daniel passed his "car seat test" and should be arriving home this evening with Tracy and Herb! They should be arriving at the hospital about now:) Please pray that everything goes smoothly!!
Kim McAdams
mommy to Skyler and friend to Tracy and Sky
Wednesday, July 13, 2005
Hi everyone..
Sky's update was spoken too soon. She has been VERY sick since Saturday. I believe she got it from me. She started with a sinus infection now it is a full blown cold. Fever, yellow snot (sorry no other way to put it) bubbling out of her nose. Mouth full of secretions and getting junk (but not too much) out of her trach.
She is breaking my heart cuz she has the "I don't feel too good look". Her sleeping is terrible and her heart rate is elevated. She hasn't been this sick in forever.
Since being trached she has constipation issues. She always been one of the lucky ones in that department, so I guess she was due. We even gave her an enema that didn't help as much as we would have liked it to. Any suggestions?
How long will this cold last?????
I am sure I am missing a lot that is going on.. sorry.
Hope everyone is well.
HUGS!!
Friday, July 8, 2005
Ok, it's been over a month so I guess I am due for an update.
Sky has been doing good. She has some sinus/allergy issues so she started clartin today so hopefully that will help them out.
She has to go see a dermatologist at the end of the month due to patches she has on her head. One spot she even lost her hair. Not too sure if it is a pressure mark or if it is fungal. I think she is excited to go because when Herb and I took her to her regular pediatrician, she was loving being out. So I promised her that her nurse Kim and I will take her up the mall shopping next week. She is so happy. She hasn't gone to anywhere (except the hospital) that was public in probably at least 3 1/2 years.
I really believe she is so much happier with her trach. I know I repeat myself, but it is so true. For those who know Sky and has seen her before and after trach I think you'd all agree (yes, even you Dave) ;o)
Sky finally felt the baby move. She looked at me then my belly then at me again. She had the oddest face on her. It was cute though.
I am in my 33rd week now. I was diagnosed with gestational diabetes and started the insulin shots. So far they aren't even helping.
I have to go to my OB 2 times a week now. Once for an ultrasound and the other for a stress test and to check my fluids. For the remainder of my pregnancy.
I am scheduled for August 19th but I highly doubt I am making it that long!!
That's about it for now!
Hope you all had a good 4th of July.
Friday, June 3, 2005
On this day at 1:11pa 5 years ago after 37 1/2 hours the most precious gift came into my life... Skylar Elizabeth Saranchuk. A name that will melt my heart forever.
When she was diagnosed with spinal muscular atrophy at 4 months of age I thought my world was coming to an end but little did I know, it was just beginning. I made a promise to my girl that I would help her fight to the end and it is a vow I am willing to keep and keep it proudly.
She has made me so happy and has taught me so much. Little did I know that I would need her as much as she needed me. She is my savior.
I am so proud of her. Her will to fight and survive. I wouldn't trade her for the world. Although she cant do what other children, she can do so much more with her actions and attitude.
I thank God for her everyday. I never thought that I would have such a beautful angel in my life and I am so glad that I do. He has blessed me with the most perfect unperfect child there is.
I know a lot of us can relate to a song about thier child but I have to agree with my friend Amy and quote this verse...
"When she wraps her hand around my finger
Oh it puts a smile in my heart
everything become a little clearer
I realize what life is all about.
Its hanging on when your heart has had enough
is giving more when you feel like giving up
Ive seen the light its in my daughters eyes"
Thank you for saving me Skylar. I love you so much. You are my hero.
Happy 5th birthday. The best 5 years of my life.. and I look forward to many more to come.
Friday, May 27, 2005
Finally, we are home. We got here Tuesday. After the ride home Sky had a heck of a time. Desatted to the 50's then kept going up and down all day. Once she fell asleep she was fine then in the morning all over again it started. So we changed her trach out and it was full of junk. I think it was from bouncing around so much in the ambulance. Once we changed the trach she was good.
What a difference in her. She is sleeping better, loving looking around and chatting up a storm. She could say mom pretty clear and yeah but what else she talks about I am not sure of and I am afraid to find out. LOL
It was a long 2 1/2 weeks but hopefully that will be it for a long time. It was the first time she was hospitalized since September of 2002 and although I love everyone down there I would much rather stay home.
I was so worries that we wouldn’t make it home for Skys birthday but my little girl will be 5 next Friday!!! I can't believe it. I am so excited.
Thank you all for the prayers. Lisa, I never got to thank you for the coffee cake and bear. It just so happens we collect boyds bears for Sky. So thanks you.
Sue, the candle order will be placed this week. Sorry it took so long but this wasn't expected.
Laura, do you still want yours?
That’s it for now. Time to catch up as much as I could.
Hugs to all of you!!
Love and Hugs,
Tracy and Skylar
SMA1, born June 3, 2000
Friday May 19, 2005
Looks like we are breaking out of here Tuesday. Home sweet home. As long as Sky keeps behaving herself and the trach change goes well. I am going to be a bit nervous doing that. Sky is still talking up a storm. I am still adjusting to that.
I have to brag on how much I lucked out on finding a hospital that is staffed with such loving and caring nurses, doctors and respiratory therapists. We started coming here when Sky was just a year old. Most of the nurses grew attached to her right away. It has been almost 3 years since Sky has been hospitalized and they still love her to death. This time I had nurses from the floor we are usually on coming down just to see her. Everyone keeps telling me what a great job I do with her but to tell you the truth, I give Sky all the kuddos. She is the one to fight, I am just her advocate. Thanks to all them they help me when I am in my weaker times. I love them all and I am so thankful for them. Even the newer doctors that I havent met till this visit. They are great!!! I havent heard anything negative from them about my choices for Sky and her condition. I cant even express just how thankful I am!
Oh BTW...Sky got her 1st top tooth! It might have almost took 5 years but gosh darnit, it finally came in.
Wednesday May 17, 2005
Well here is another picture of Sky. Sorry if she doesnt look too happy to you all but truth is she is. I am going to have her eyes checked since she has a terrible lazy eye (as you can see)
She doesnt tolerate her right side still. I am kind of forcing her to lay on it now just to give her left side a break. Thats odd.. it is usually vice vera.
She is for some reason sweating up a storm. cant figure out why. It is off and on. All her labs are coming back good. She did have a major episode this morning desat to the hight 50's and heart rate in the high 40's. didnt like seeing that but came back up and has been fine since. She has TONS of oral secretions and we rarely get anything from the trach.
They are hoping to change it Friday and the we could go home soona after. I dont even think they are going to make me change it myself since I have nursing. I am sure I could learn by watching them once but still, I am just getting used to moving her head finally.
She is still talking up a storm. I know it is her talking because when she is sleeping you dont hear a peep from her.
Thats about it for now. Kim.. thanks for calling and the balloons. Annette same with you.. it was nice to talk to you, and she loved her gifts and HAPPY BIRTHDAY! Sue thank you for calling also!!
Happy birthday also to Kenny, Erinne and Devon!
Prayers to all the other sick kiddos. Hope everyone is well and home soon!
Monday, May 16, 2005 11:08 AM CDT
I have a second here so I thought I could send a picture. She looks miserable but she still isnt 100 uite yet. She is doing great though. Its been a long week. I am exhausted. Sky is talking up a storm but I think we are both very eager to go home. I also sent a pic of the back of her head cuz I never truly realized how long and wavy her hair actually was.
Hopefully soon I will be back into the swing of things and getting caught up.
Thank you all so much for the prayers. It really means a lot to us.
Tracy
Friday, May 13, 2005 10:42 AM CDT
Hey everyone! GOOD NEWS! Skylar's surgery was a big success this AM! The intubation was done...without a hitch...and then the surgery went along just fine. She is still pretty much out of it...but doing really well. And Tracy is SO relieved! Now, it's just a matter of learning a new way to do things...but knowing both Tracy and Skylar...they will have it all "down" in NO time!
Thanks so much for the prayers!
Kim
Tuesday, May 10, 2005 1:46 PM CDT
Hey everyone...
I just spoke with Tracy, and Skylar is having a really, really rough day. She keeps fighting the vent (used like a BiPap) and has been doing so for a months now, actually. Today, she kept dropping and bradying...and they've had her on/off O2 today to try and keep her SATs up. Both Tracy and Skylar are so tired...
So, Tracy told me to pass along to you that she has thought long and hard for the past year about what to do about Skylar, her "Bipap" dependency...and the fact that she is no longer working with the vent/BiPap set-up, especially when she is awake. She is breathing so hard through her mouth and not taking the breaths, and because they cannot read her chest xrays, they don't know if she's collapsing, or if she is just not taking in the vent breaths via the mask. Tracy's doctors (and home nurses) agree with her that it is time to try something different, so Tracy is scheduling a tracheostomy for Thursday or Friday of this week. She truly feels that this is the best choice for Skylar, because the mask/vent is no longer working for her...and structurally, her face has changed dramatically. Tracy also believes that something has changed in Skylar's airway...and she is just dropping more frequently. She really feels thi! s is best for Skylar and I know we'll all support her in this decision. One that she actually, essentially, made last year, but Skylar's doctor asked that they give the pap/vent another try. It has just gotten to the point where it is making her quality of life more fragile than it would be should she have an open airway...and Tracy, as always, wants to do what is best for her (not-so-)little girl...
I will update you when I hear more...but please send your prayers in the direction of Danville, PA...
Thanks,
Kim
Sunday, May 8, 2005 9:46 AM CDT
Prayers, please...for Miss Skylar. She was hospitalized last night. Here is last night's update from the SMA Support Chat list:
Skylar has not been totally stable off/on for the past couple months, but the past few days she's had a tough time holding SATs, off/on digestion issues, high HR, low grade fever, flushing, etc. Tracy said that she really needs to have her evaluated, because this has been going on and off for too long and it's gotten worse the past couple days...and she is at a loss as to what might be happening. And if Tracy is at a loss, then there HAS to be a problem...because that woman has been thru it ALL
with Skylar. She said Skylar's just not acting like herself (and must be uncomfortable, because she does okay when she's sleeping)...and there's definitely *something* going on. They had an appointment with Dr. Perez on Monday...but Tracy didn't want to wait until then...So, if you could send some prayers their way, I'm sure they would
appreciate it! ~Kim McAdams, mom to Skyler
When I talked with Tracy last night, they were flying Skylar to Danville and Tracy was driving there to meet her. I will update later if I hear from them, but please keep Sky in your prayers. Pray for her to feel better and also for some answers as to why she has been struggling lately. Tracy and Sky, we love you girls, and we are sending you big hugs!!! Skylar, you cut this out and get home with your mommy ASAP! Love, Aunt Liz and Kalair
Wednesday, May 4, 2005
I know I have been quite distant but I have been really busy. Hopefully I could remember to include those who need to be addressed in this email (probably not though). We have been busy getting ready for Skys fundraiser this weekend. After the fundraiser is over, we will be selling the left over tshirts for $10. They are like last years but a different color (I believe). It is the dart tournament fundraiser. Also, the candle order is going out Monday so you still have time if you want one. They are $15 a candle. Well worth it too!
Then once this is over we are planning for Skys 5TH BIRTHDAY!!!!!!!!! I cant believe my baby is going to be 5!!! A week after that I have the baby shower. Speaking of.. I was up babies r us registering and I only ran in to add something so within 15 minutes I came out and someone hit my car!! I have no luck with that. Herb is going to try to buff the paint out though so I don’t have to claim it. There is a small dent but not that noticable.
Sky has been doing good. She has had some issues but as always pulls through like a trooper. She is getting bigger everyday. Sleeps like crap but I am getting used to that. Sometimes she thinks she is even too old for a nap and in some ways she is old enough to outgrow her naps. She is on the verge of loosing another tooth.
As for me... I have quite the belly. I am now 26 weeks and I am about to start counting the days down. I am going to plan another section so we could be prepared with the nurses to be with Sky. I never left her for a night and let me tell you I am not looking forward to it. This pregnancy is so different. It is so odd feeling the baby move so hard and so much. Sky never really moved that often, so this is really a new experience for me. The baby should be here about August 5th maybe the 12th. Skys getting excited. Herb cant wait and I am not looking forward to the summer.
Mary Anne and Barry, thank you so much for the necklace. it is beautiful. You never forget Sky and I. I appreciate that a lot. Although Dave and I are great friends now, even when times were tough you were here for us. You come down if your near by and I know Sky is thankful for that also. So I think you both deserve that recognition. Thank you again.
Other than that.. I will let you all know how Saturday goes.
Thursday, April 28, 2005
The past few days Sky has not been feeling well. Her O2 sat has dropped, her heart rate has been high, yet her lungs sounded as clear as ever. She has issues with upper airway secretions and that is really not fun at all. Yesterday she had to be coughed for almost 3 hours until she finally cleared out. She has absorbtion issues now and something she never had a problem with ever..pooping. Nothing could make her go.......
but...........
finally.........
today she did and she is now back to her old self (atleast for now) !!!Kids with SMA that get constipated end up with other issues. It could cause the absorbton problems and even breathing issues.
Another good thing though is that I have her on her side now and that is also something she hasnt been able to tolerate since she fractured her arm in January. I am sure her back is sore so I think I will let her lay on her side till morning (thats if she doesnt want to get off it).
I hate seeing her not feeling well. She doesnt always tell me whats wrong or what hurts and it just breaks my heart. I just want to pick her up and sqeeze her to pieces and if she wasnt so fragile I would.
I am still getting my brothers page together and as soon as it is done will be sure to let you all know.
Lots of hugs sent your way!!
Tracy and Skylar
Saturday, April 16, 2005
Hello everyone and thanks for stopping by. Sky has been doong well. At times she has a hard time tolerating her head being turned to the left. Her heart rate will shoot up and her O2 will drop. I cant figure out why this happens. Some days she is fine with it others...forget it. I hate her lying on the right side all the time. Her cheek is so chapped it looks like it hurts. If anyone has any suggestions on what I could use on it besides lanolin, neosporin or just lotion please feel free to let me know. She really likes to rub my belly now. I ask her if she wants to say hi the the baby and her eyes gets all bright. She thinks this is her baby to play with all the time. I think she will be a breat big sister.
Speaking of.. I dont think I have updates about my QUAD panel outcome. They thought the baby was at high risk of spinal bifida. We went to Danville for a level 2 ultrasound and baby Daniel Lee is as perfect as could be. We got to see his spine, all his heart chambers.. it was really neat.
So about August 12th he will come into this great world of ours.
Thanks for stopping by....
Lots of ((((((((((hugs))))))))))))
P.S Happy Birthday in Heaven Gramma!! We miss you and love you!
P.S again... be sure to stop by my Uncle Ronnies site that Mommy and Aunt Liz are starting for him. It is not quite done yet.. but mark it if you'd like.
www.caringbridge.org/pa/ronnie
Saturday, April 16, 2005
Hello everyone and thanks for stopping by. Sky has been doong well. At times she has a hard time tolerating her head being turned to the left. Her heart rate will shoot up and her O2 will drop. I cant figure out why this happens. Some days she is fine with it others...forget it. I hate her lying on the right side all the time. Her cheek is so chapped it looks like it hurts. If anyone has any suggestions on what I could use on it besides lanolin, neosporin or just lotion please feel free to let me know. She really likes to rub my belly now. I ask her if she wants to say hi the the baby and her eyes gets all bright. She thinks this is her baby to play with all the time. I think she will be a breat big sister.
Speaking of.. I dont think I have updates about my QUAD panel outcome. They thought the baby was at high risk of spinal bifida. We went to Danville for a level 2 ultrasound and baby Daniel Lee is as perfect. We got to see his spine, all his heart chambers.. it was really neat.
So about August 12th he will come into this great world of ours.
Thanks for stopping by....
Lots of ((((((((((hugs))))))))))))
Tuesday, April 5, 2005
Hello to everyone and thanks for stopping by! First I want to thank Liz for updating Skys page and also for the birthday wish (I think you are the only one of my friends that remembered it was even my birthday) Of coarse the best birthday present I got this year is Skylar being the perfect girl she is.
There really isnt much to update with her. She has been doing good. The weather is finally starting to warm up so I am looking forward to getting Sky out a bit now. She is trapped in this house all winter long. I dont even attempt to take her out. Too worried about her getting sick.
So we are definitely looking forward to the summer!!
Friday, March 17, 2005
Happy St Patricks Day!!
Hope everyone has an extra bit of luck today.
Thank heavens I am Irish.. I definitely am lucky. I often say I have no luck at all but truth is I do.
I have blessed with this beautiful little girl that has taught me so much. I just love her to pieces.
Sometimes I get mad and I have a "why me?" moment but I've come to realize that she was sent to me for a reason. She wasn't send here for people to feel sorry for me or her, but for something much more important. To teach us all a bit about life.
There was once a time where I thought the little things in life were a real damper that I couldn't deal with. Now the things I think are hard I think are the simple things.
I've watched Skylar go through so much. Up until the time she was 2 1/2 she had went to Heaven 4 times, had 4 surgeries, been hospitalize at least 50 maybe 50 times, yet she still pulled through on her own will. That is a little girl (well a baby at the time).
There are people in her life that are afraid to get close to her, people who were once a big part of her life that she is lucky to see 2 times a year now. There are people in her life that totally dropped out of her life. I feel sorry for them people. Sky is growing and maturing everyday and they are missing out on it. I don't know how long I will have her, maybe another day, another year, another 10 years, but whatever the time is I stuck by her and knowing I did that fullfills me.
I have also been blessed with luck and finally have a good relationship with Dave. Also, I have found someone who loves Sky and accepts Sky as his own. I never thought I would find that. Not to mention the new life I will bring into this world this summer.
So things are good. I guess I never thought I was lucky..until..I actually did think about it.......
Thursday, March 3, 2005
Skys bandage is finally off!!! She is so much more content and happy without it. Her heart rate has been better and her o2 has been higher. She also has another loose tooth. She didn't even get her 1st tooth till she was 2 1/2. Has them for 2 years and now they want to fall out?!?! I only hope they come in quicker this time. She did however make $22 off this tooth!! Thats right $22!! When I was a kid, I was excited over $.50. Wow, thing sure do change.
As for me, I am in month 4 of my pregnacy. I found out today that I have to go to see a neurologist for my headaches. They've been getting bad. I think it is more sinus trouble and thats what causing them. I dont go till the end of the month. They will do a few tests and take it from there.
Our prayers are with all the children struggling right now. We cant wait for spring to come so everyone could be on the road to a healthy new season!!
Lots of hugs sent to you all.
Thanks so much for all the cards, ecards, packages and everything else sent to Sky. She enjoys them all. Also, thanks for signing her guestbook.
Sunday, February 20, 2005
Hello... First, I need to express my sympathy a part of our SMA family for the loss of Jacob (Baby Bear). Jacob earned his wings last night a few minutes short of 9 PM. His web page is www.caringbridge.org/canada/babybear
Ange and Alyssa, you will be in our prayers during this most difficult time. My heart breaks for you both.
I will never understand this disease. Why it take so many young children. Why cant it be cured? It really sucks. There is no other way to put it. I think of all the angels that has passed already. I think of the families they left behind. Then I scare myself and think.. wow.. that could be me. I know that is wrong of me to think, when so many have gone through it before. The mothers I know of these passing angels are such strong women. They amaze me with thier stregnth. I dont know if I could ever compare to them. It scares the life out of me with the thought that Sky might not be here some day. She is my life, my everything. Even with another baby coming she is my #1.
On another note, Sky lost her 1st tooth. She isn't a baby anymore. She has 2 other loose ones also. I was kind of upset when she lost it. The fact that she will be 5, has grown into a little girl with her very own temper, attitude, likes and dislikes is amazing to me. A lot of people even to this day.. when they learn of Skys disease they will often say.. "Oh Im so sorry". The only thing to be sorry about is the fact that SMA even exisits. The fact that Sky has it, well, although I wish she didn't. SMA makes Skylar who she is. Even if there was a cure tomorrow and she walked next week. SMA will always be a part of Sky. This is her life and she loves it. I love her for who she is, not what she can and cannot do.
Sorry for going on here but everytime I read of another angel I realize just how blessed and lucky I am to still have Skylar here with me...
Friday, February 4, 2005
Skylar has been doing pretty good. She did get sick for about a week but I didn't have time to update. Her SATS were dropping and she had bouts of bardycardia. I haven't seen that in quite some time and it scared the life out of me. After 2 days I had them come take a chest x-ray and it turned out she had mid left lobe atelectisis (collapse). So, I did extra nebs and coughing and within days she was back to normal.
As for her arm, we go back Monday to get another x-ray. Hopefully it is all healed and we could take the bandage off. That is a pain in the rear.
AS for me, I think I am getting round #2 with morning sickenss. It was gone for a while but the past 4-5 days or so, I have it all back including the headaches. Is August almost here?
Please keep our little friend Lance in your prayers. He hasn't been well and he is on a roller coaster right now. You could check him out under Skylars friends.
Thanks all.. I will try to get better at updating!!
Saturday, January 22, 2005
Skylar is finally feeling a bit better. Her pain seems to be minimum. She doesnt cry when I move her now and you could just tell overall that she is much more comfortable, thank God. She was even talking away to her teacher the other day when she was here with her. I cant wait till Feb 7th when we see the orthopedic again. Hopefully she is healed and she could get the bandage off.
As for me.. we heard the baby heart beat Wednesday. 160's. I have to go get tested for gestational diabetes. My sugars have been really messed up.
We are on the middle of a snow storm. YUCK!! I hate the winter. I have been very blessed that Sky has been so good these past few winter season (knock on wood) but I do lock her up for the winter and take her no where!! I just pray that she stays as healthy as she has been.
Hope everyone is staying warm!!
Lot of hugs!!
Tuesday, January 11, 2005
Oh boy, how I do NOT miss hospital visits. I think this is the first time in 2 years Sky was even at the hospital. Thanks Kin for updating!!
Last night while putting Skylar to bed, I was telling Herb how Sky looks like she put on weight again. Especially in her arms. Then when I looked closer, her right upper arm was very swollen and when I touched it Sky was cry and cry. So I thought maybe she got bit by something (I dunno a spider?). Well I put warm wraps around it all night gave her some advil and she fell asleep.
This morning when she got up it seemed that her arm was even more swollen, so I held my breath swallowed my pride and called the doctor. After taking 1/2 hour to get there when it should have taken us 10 minutes (we are in the middle of another terrible storm) they did the x-rays and showed me her arm was fractured. The tears began to appear and the doctor reassured me that it was nothing I did wrong.
When I looked I Sky I just wanted to pick her up and hug her to death. I never saw my little girl in so much pain. She has been through so much in her life but I never saw her hurt this bad.
So up to the hospital we went and I actually LOVED the orthopedic. he was so sweet and very gentle with Sky.
Well he opted not to cast her but make a sling our of an ace bandage. He wrapped the bandage around her chest then again around her arm. So he chest wall is acting as her sling. She seems comfortable with it so that’s good. She needs to wear it for 4 weeks then we go back.
He believes she should have no problem healing, saying it was a minor fracture. The way I saw the x-ray it looked completely broken in 2.
Sky was such a trooper. The only time she'd cry was when anyone touched her arm. Other than that she loved being out. Who cares if it was snowing sleeting and 20 degrees!!
Well Sky is beyond wiped out now. It was a long day. It is only 8:30 and she is out like a light. I think I am going to join her.
Gosh do I love her!!! She is so amazing.
Thanks for the prayers! You are all so great!
Tuesday, December 28, 2004
Hello. We hope everyone had a great Christmas. Sky sure did. She is very much a girly girl because at 4 1/2 years old she was more interested in the clothes rather than the toys. Thanks you her "elves" Sky had so much to open on Christmas. So much that I helped her with half and Herb helped her with the other half.
I also got a gift myself. I found out that Sky will have someone to play with come next year. Yep, I'm pregant. Not due till August 22, so it sure will be a long hot summer. I'm excited, scared but excited. I am sure Sky will love having another baby around.
I hope everyone has a great and SAFE New Year.
Lots of hugs sent your way!!
Wednesday, November 24, 2004
Happy Thanksgiving!!
This is Skylars 5th holiday season with us, and I couldn't be happier. She is such an amazing little girl.
There are so many things to be thankful for but most of all I am so thankful for Sky. She is my little hero.
To my extended SMA family and my family at H&H.. thank you for all you have done for me. You are a terrific group of people.
To my mom, you are my guide. You have taught me right from wrong. Your heart breaks when mine breaks, you cry when I cry, you hurt when I hurt. You picked me up when I was down and made me realize that I need to go on. That I had Skylar and couldn't let me weakness get the best of me. Not only were you there for me when we learned of Skys diagnosis but you were there for me when my heart was broken the most and again, you picked me up and moved the mountain and made me realize that the sun will shine again. It did thanks to you. I love you mom.
So many people will be shocked that I am writing this but... Dave, thank you so much for giving me such a beautiful little girl. I don't know what I would do without her. It is because of you that I do. I don't think anyone will understand the love we have for each other. As much as we have been at each others throats, hating and loving each other, I will forever be thankful to you. I will always love you.
I pray God keeps everyone safe and heal the hearts that mourn from the loss of loved ones. I pray our troops will be home soon. I am thankful Shawns life was spared.
Herb, thank you also, for loving me and loving and excepting Skylar as she is. Love you..you are great!
So off my novel.. everyone be safe and eat lots of turkey!!
Be sure to let us know you stopped by.
(((HUGS)))
Friday, November 19, 2004
Please keep the Webb family in your prayers.
Sweet Cole earned his wings November 18th at about 1:30AM. He was such an amazing boy who has suprised all of us. He will forever be 2 years old.
Kristen and Dan, my heart and prayers are with you at this difficult time.
I will never understand why SMA exisits and takes the sould of sweet innocent children.
Cole will be very missed.
Thursday, November 11, 2004
FINALLY!! Skylar is back to her old self again. Her illness lasted over a week. Wheezing and being very junkie in her lower lobes :o(
Thank you all for the prayers. They do work.
Now count down to turkey day!! Can't wait. Sky likes the mashed potatoes and cool whip. I guess she likes the fact that they could disolve in her mouth. Good tasting for her :o)
Thursday, November 4, 2004
~~ Thursday night update ~~Well, Mary Claire (nurse for 3.5 years with us) called me home tonight. Sky crashed pretty good. This is the 1st scare M.C had with us. Sky was down to the 50's. the suction wasn't functioning right. When I got home Sky was white as a ghost. We cough and coughed till the suction got functioning correctly.
She plugged pretty bad. I did my coughing upside down with her and we got it up. When we cleared her out she gave me the look of "look what I could do" and was fine since.
Please, please keep her in your prayers. I am SOOO scared this will turn into pneumonia.
Thanks a ton,
Tracy
~~~Thursday day~~~Well I tried to hold off with this journal in hopes that it would pass but.... Sky has been pretty sick since Sunday. She has a lot of junk in both her lower lobes. Her fever is up and down. The highest it went to was 102. She is on her 2nd round of antibiotics and has now started another breathing treatment. It has come to the point that I have to do CPT (chest physical therapy) cough her while she is just about all the way updide down. When I do this, it does start to move some junk up from her lungs and she will sound clear for awhile after the treatment, but within 3 hours it is all right back to the lower lobes. I guess the good part of this is (if there could be a good part) that her secretions are clear. Her heart rate is good (minus when her fiver spikes) and her O2 saturation on bipap is 98-100 So please keep her in your prayers. I am so afraid if this turning into pnuemonia.
As for me... my headaches seem to be getting more frequent. For the past 3-4 days now I have had one. The pressure that I get in my head is stronger now also. My doctor says that it is a "stress" headache and I do believe that. November 13th my brother will be gone 9 years, rest his soul. My depression hits me hard this month (well really the whole holiday season) and I guess I am stressing over it. Well I have to go back to the doctors on the 19th and he is going to run some tests if it doesn't get any better.
I will keep you updated on both of us as soon as I can.
HUGS!
Friday, October 15, 2004
Well, I thought we were doing good here but Sky is sick also. I could tell yesterday that she had that "sick" look in her eyes but she really wasn't acting sick. As of last night though her temp was 100 breathing was hard and her heart rate was VERY high for a while (160s) I had to wake up Kim (Sorry Kim, Love ya) to find out how to up her vent pressures since we just got it and I am still trying to figure it out. Once we upped them to 25 she started to calm down. She finally fell asleep but it took her heart rate a bit to come down. The rest of the night she did find. This morning her fever was down but she has been up for an hour and it is starting to climb. I am heading to the doctors myself today, so I am going to start her on something.
She even had to miss a Daddy visit today. I feel bad when I have to tell him that she is sick. He knows it is better if he doesn't come down but I still don't like to tell him. We actually have a pretty good relationship now and I believe Sky is VERY happy about that. I hate it even more that I tell her he is coming then I tell her he isn't.
Well off to the doctors. I will update ASAP.
Friday, September 17, 2004
What a scary day for Skylar yesterday.
We were having our average normal day when I went into the shower. My cousin lives with us and he keeps an eye on her when I am upstairs doing something (he's 32, not a kid)
Well, I was getting out of the shower and he yelled to me that he needed me NOW. I went down and Skys bipap was shut off and her O2 sat was at 72%. I don't know how the bipap got turned off or if the power flicked or it was bumped or whatever but it was off. I went over to her and she was already dusky. I had my cousin run up into her room for her cough machine and as he was running up the steps I looked and she was totally gray and unresponsive. I looked and her O2 was at 33%. I started breathing for her and he finally came with the machine (it took like 30 seconds but that seems like forever). I cranked up the O2 and coughed away and within a minute her O2 sat was back up. When I would go to suction her however she would drop quick back into the 70's. I got a lot of junk out of her and within 15 minutes she was watching her shows like nothing even happened.
She's been fine ever since.
My little (or should I say porky) girl never fails to amaze me. I haven't seen her like that in about a year and I haven;t gave her mouth to mouth in about 2+ years. I was shaking like crazy but Sky and I are a team and she is GREAT.
I am now looking into a vent to use as a bipap. It has a backup battery life. It isn't a long one but a minute would be great even if the power failed.
Other than that, Sky has been doing good. She just got over a cold but did well with it. We are getting her a new chair soon. She outgrew her other one already.
She sends BIG (((HUGS))) to all of you!
Saturday, August 21, 2004
Hi!
Well we arrived in SC on Thursday and let me tell you, I will never do a trip like this again. First we met up with another SMA family in Pa. Right before leaving PA the AC in the van breaks. So we stop in VA to stay the night and all of a sudden the van is very loud! So ok fine, it is because if the Ac belt. When leaving Va I decided to drive for a bit so my friend that went with me Dan (Herb) could take a break. He drove most of the way to Va. About 15 minutes into the drive, Skys alarms start going off. She is all stressed out. So we hurry pulled off and switched. It took me a bit to get her relaxed but she still wasn't the same but did ok for the rest of the ride. Now we get into Greenville SC (where we are) and the other Skyler (that's the other SMA families child's decides she wants to have an episode so we pull off again. As we were parking the van the horn starts going off and it won't stop, so Herb has to disconnect that. So that settles that, everything is fine. WELL, the big shab bang.. we pull up to the hotel and all of a sudden ALL SMOKE and the van dies!!! I was ready to scream.
We get in.. gave us the wrong room. We get that settled.
Called Daves mom (Skys dad) and told her what was going on. She calls has the van towed and it is now being fixed. We are supposed to leave Sunday but we might not be able to leave till Monday. I just want to get Sky home. She is having episodes of desaturation and she is just not used to traveling like this.
I am glad we are here with all our friends but it is so hard on her.
I would never travel this far with her again.
Please say an extra prayer for a safe unevenful trip home.
(((hugs)))
Tuesday, July 27, 2004
Well our dear friend Taleah was laid to rest yesterday and since her passing my mind has been tired. All I think about is Taleah and her mother Monica. Last year we were in Washington DC with them and touring all the national sites. It is so hard to believe she is gone. Especially that fact she earned her wings 2 days before her 4th birthday.
My heart breaks for them.
When Taleah flew she was watching "The Little Mermaid"
This is something I noticed and wrote to Monica...
I always sing "Part of your World" To Skylar from the Little Mermaid. I was talking to her about Taleah last night then we sang our songs. When I sang that one to her it really hit me (yet once again). Taleah was watching that moving when she flew.
Here are the words to that song...
Part of Your World
Look at this stuff
Isn't it neat?
Wouldn't you think my collection's complete?
Wouldn't you think I'm the girl
The girl who has everything?
Look at this trove
Treasures untold
How many wonders can one cavern hold?
Looking around here you think
Sure, she's got everything
I've got gadgets and gizmos a-plenty
I've got whozits and whatzits galore
You want thingamabobs?
I've got twenty!
But who cares?
No big deal
I want more
I wanna be where the people are
I wanna see, wanna see them dancin'
Walking around on those - what do you call 'em?
Oh - feet!
Flippin' your fins, you don't get too far
Legs are required for jumping, dancing
Strolling along down a - what's that word again?
Street
Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin' free - wish I could be
Part of that world
What would I give if I could live out of these waters?
What wo! uld I pay to spend a day warm on the sand?
Bet'cha on land they understand
That they don't reprimand their daughters
Bright young women sick of swimmin'
Ready to stand
I'm ready to know what the people know
Ask 'em my questions and get some answers
What's a fire and why does it - what's the word?
Burn?
When's it my turn?
Wouldn't I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world
I believe Taleah wanted to go to that world. I just wish it wasn't so soon. I am sorry Taleah earned her wing so quick. I am sorry SMA even exists.
I would do anything to save our children. I am so thankful for Skylar but so afraid of the day when she will earn her wings.
Tia~~ We love you as an angel as much as we loved you here with us.
OK---> I am off my soap box now. Thanks for taking the time to read this.
Lots of hugs!
Friday, July 23, 2004
I HATE SMA!!!! It took another one of our precious children last night. Sweet Taleah.. we will miss you very much. Taleah was only a little over a month younger than Skylar and would be 4 years old this Sunday. I am in shock and so saddened.
Here is Monicas posts..
Our sweet, beautiful, brave Taleah earned her angel wings this evening.
I can't yet make myself really believe it. She was strong and healthy with no sign of problems. Somehow, her monitor got turned off and bipap got bumped and unplugged. We figure she aspirated and went very, very quickly.
She passed quietly without even disturbing any of her siblings who were all in the living room watching Little Mermaid with her.
When John checked on her she had already flown.
We are heartbroken beyond words, beyond expression. We held her and held her and loved her. I ran my fingers through her hair for hours as different family members arrived to say goodbye.
Her fourth birthday is day after tomorrow, she would have been four.
We are planning on having her funeral on Monday, we don't know where yet. I would really like a funeral outdoors for her.
The house seems so empty, so quiet.
Monica
Please keep Monica and her family in your prayers.
Saturday, July 17, 2004
Sky is so odd sometimes (not in a bad way of coarse). She has not been tolerating the S/T bipap lately. I figured it was because she needed more support. She would do well with the VPAP at 24/2. Well Betsey from Millennium came yesterday and messed with the settings. Sky always has to be on timed mode or she would flip. Well Betsey put her on S/T with pressures of 12/3 back up 24 and Sky is doing great with it!! When she goes to bed she wants timed mode back and her normal rate of 24/2. Liz always said that Sky had her own version of SMA because she does things that no one could figure out and I am starting to agree with her. Anyone have a clue why she agrees with this pressure???
She could get so confusing. Got to love her though.. she sure keeps me on my toes!
~~~~ Pray for a Cure in 2004~~~
Love,
Tracy and Skylar
SMA 1, Born June 3,2000
Skys links,
www.caringbridge.org/pa/skylar
www.our-sma-angles.com/SKylar
Tuesday, July 13, 2004
First off Happy Birthday to Payton (SMA1) who will be 4 tomorrow!! I love hearing that another one of "our" kids are beating the odds! Also happr birthday to Skys 2 pops.. my dad (7-3) and stepdad (7-11).
Well we are finally settled in our new house and love it! There is so much more space and not as hot as the other house. It is great! Sky adjusted very well. The first night she was a bit upset about it but she just wanted mom to lay with her till she fell asleep. So we began to watch Dumbo, I rubbed her head and she was sleeping 5 minutes later.
Sky is getting bigger and bigger everyday. She seems to grow everytime I pick her up. She is HEAVY. That is one thing I dont like about this house. The steps. Talk about being out of shape, that makes me feel like I should be working out much more than I do ;o)
Other than that. We are looking into going to the beach in August sometime. Also, we are hoping to go to S Carolina for a SMA commune. It isn't looking good though but I hope to get there. There is no way I could pack for that trip in my tiny Kia, or we would be going. :o(
Please keep our good friend Shawn in your prayers. I just found out he was right in the heart of the war.., Baghdad. I am very worried for him.
Time for Skys nap so got to run..Lots of love and hugs!
Thursday, June 24, 2004
This morning we learned that our dear friend Gilly Powell earned her angel wings, Wednesday night, June 23rd. Gilly was 2 1/2 years old with SMA 1. Gilly was a beautiful girl that was loved dearly by her parents, Rex and Tine. Se had the most beautiful smile that would greet you when she saw you till the time you walked away. Sky and I were with Gilly just last month in Mass. She will be missed.
I REALLY HATE SMA! I pray for a cure soon so our children won't have to earned thier wings. Life could be so unfair. I am thankful for ever second I have with Skylar. Thank you God.
Please pray for Tine and Rex. If you would like to visit Gilly, her website is www.our-sma-angles.com/gilly
Thank you.
Saturday, June 19, 2004
Well, after a big moment of holding my breath, I decided to keep Sky home from the hospital and manage her being ill. This is the worst she has been in about 2 years. Her heart rate stayed in the 170's-180's for a while and her fever stayed around 102-103. Her breathing was very labored and she couldnt hold her O2 sats up.
Well, I am glad I kept her home. I put pedialyte in with her formula and pumped her with water, and then Thursday around midnight her fever broke! It was about 100, but that was so much better than 103. Once her fever did break her breathing became more normal. Still a bit labored but nothing compared to what it was. However her heart rate was still in the 140's-150's.
Friday her day was pretty good. However Friday night was tough. She plugged bad and dropped to 502. Coughed her for about 10 minutes straight and that brought her back up to high 90's. Her chest didnt expand as well as it usually does.
Today (Saturday) was a pretty good day. She is feeling much better but by no means is she done being sick.
Prayers are still appreciated.
Thanks!
Thursday, June 17, 2004
Well, as much as I hate to do this.. I am taking Sky to the ER as soon as I get stuff together. I have been sick for over a week now with a cold/bronchitis and I believe Sky picked up some of it plus more. Her heart rate is hanging in the 160's-170's her temp is almost 103 secretions are thick and O2 is holding from 93-95 with her bipap pressures at 25/2.
I believe she is dehydrated. She hasnt peed since 8 this morning and that is odd for her. Her breathing is labored.
So off we go. I will update when I can...
Afternoon update~~~
Well we are still home. I am trying my hardest to keep her here but it isnt easy. I am pumping her with fluids, rotating motrin and tylenol. Fever is down to 101.8, O2 is up from 97%-99% but heart rate is still high.
Any suggestions on anything??
Im thinking of cutting her baby food out for a day and mixing water instead for extra fluid. UGH!!! I dont know. I havent had to worry like this in almost 2 years.
Prayers appreciated!
Thursday, June 3, 2004 3:04 PM CDT
On this day at 1:11pm after 37 1/2 hours of labor my precious girl came into my life. She was the 1st girl born on either sides of the family in 16 years. She was a miracle. She was not supposed to even be born due to surgery I had when I was 3 months pregnant. They were sure she would not make it. She did!
At 4 months of age she was diagnosed with SMA. They told me she WILL die by the time she was 1. She did~ but she came back after almost 1/2 hour of no response. They thought for sure she would be "slow" due to the amount of time with no oxygen..well wrong again! Sky is not slow and most of the time she outsmarts me.
Guess what (as if you don't know) SKYLAR IS 4!!!!!!!!!
To me it is a miracle. I lost her 4 times in these four years, every time I debated on giving up but I didn't and I thanks God I didn't. He has blessed me with the most perfect, unperfected child ever. Sky and I have been through much. The heart ache of her Dad coming and going, moving 2 times a year, the frustration of illnesses, times of feeling so weak the list could go on and on.
Skylar keeps me going. She is the one I want to wake up to everyday and the one I want to kiss at night.
I need her as much as she needs me.
Thank you my precious angel.
God sent her to me for a reason and every day I realize more and more why he did. She is my life.
Thank you to my SMA family. So many of you have been here for me through think and thin. I must "point" out a few of you. Without you all I would be lost.
Mary Bozdo and Liz.. You were the 1st two I have talked to about SMA. If I never talked to you, Sky would not be here today. Dr Bach. What can't I say about him?? He has saved my girl so many times. He was there when I needed him, if he was home, work, or even in Spain, he was there for Sky when she needed him the most. Dr Perez, I am so honored to have you as Skys pulm doc. Your reasoning compassion, understanding makes you the most honorable men I have ever met. You have never questioned anything I did with Sky and I thank you for that. Kim M, I love you to death. You are always here for me e. You help me even if it is not SMA related. You helped me when I am stuck, you help me reason with life. Amy B, what could I say about you? You're great, you make me laugh when I am down and you try to make me realize that I am a better person even if I don't feel like I am.
Laura S, you are truly amazing. All the time and effort you put into our family is hard to put in words how thankful I am to you. Everyone else~~I love you all and thank you all from the bottom of my heart.
So again, thank you!!
HAPPY BIRTHDAY MY SWEET SKY!
~~I always dreamed of meeting an angel~ then God sent me one~~
Monday, May 31, 2004
Sky is finally much better! She is still having plugging episodes mostly in the morning but lucky enough, I could catch her before it happens.
I am so happy she is feeling better so now we could go ahead with her birthday plans. I am so excited my little girl is turning 4! To me it is so emotional because I never thought I would see her 1st birthday, let alone her 4th.
She has been through so much in her 4 years here with me, but she is such a fighter. It has always been me and her as a team and I will continue to be her cheerleader for as long as she will let me be.
Being a single parent to a disable child is very hard. All that she has taught me though is worth every emotion I went through. She is my life and I wouldn't trade it for the world.
Thursday, May 20, 2004
Well, the night was uneventful but this morning wasn't. She was up at 5am breathing fast heart rate was up. Her sats started dropping (not nearly as bad as yesterday) then I got her stable again and she was hanging out at 95-96She is always 99-100She fell asleep again and her heart rate was 120's-130's while sleeping. She is deciding to wake up now so she needs more coughing and starting pulmicort.
I rescheduled her doctors appointment but I am waiting for him to call bad to start some meds.
Thats the update for now...
AFTERNOON UPDATE~~~
Well, Sky really is sick. I am up to coughing her every 1/2 hour to an hour.
Her heart rate is high, secretions are still thick. Her o2 will go from high 90's to low 90's high 80's in seconds.
Sky wants me by her. If I leave the room she drops quick just by holding her breath to get me back by her.
I did talk with Dr Perez (the best pulm doctor ever!!) and he put her on Cefzil. We did also talk about trachs. I have been considering this for a long time now. I am NOT saying I am definitely doing it but it is on top of my think about list.
Well time to neb and cough again.. I'll keep you updates if there is a change.
Wednesday May 19, 2004
Dont you hate when you get in that "comfort zone. Knowing your child hasn't have an episode in so ling. I've been in that zone but Sky and reminded me how quick things could happen tonight.
I was at my softball game tonight when my nurse Kim called and said she was having a hard time with Sky. Her O2 was at 33nd HR of 80. My game was 20 minutes from home. it seemed like hours. Kim is our newest nurse and she really handled it well. As I was talking to her I walked her through it and had her cough and cough. She was down to 25nd she said Sky was very gray so she called 911.
When I got home, Sky was up to the 80's so I took over. After 1/2 hour I had her stable and had the 911 team leave. Her sugar was up to 277 and that wasn't good. For those who dont know Sky is diabetic.
Well, to narrow it down.. Sky is ok now. She is back to high 90's and HR rate it low 100's.
I was scared to death. My mom cries because she is "so proud if me". But why??? Be proud of Sky.
We have an appointment with her pulm doc tomorrow so it is the perfect time to ask for the back up cough assist.
I am pretty sure she plugged.
I am trying to get her sugar regulated right now. She is sleeping finally so hopefully her being rested will help.
Please say a prayer for her.
She will be 4 in a bit over 2 weeks!! AMAZING!!!!
Tuesday, May 18, 2004
Sky and I went away this past weekend to spend time with our extended SMA "families". We had such a great time and Sky enjoyed being with ehr friends. My cousin TJ drove us (it was a 5 hours trip). He is the best father figure Sky has. I don't know what we would do without him.
Thursday we left and went to New Jersey for Skys doctors appointment with Dr. Bach. He was very happy with her. Especially how great her chest looked. Then we headed up to New York to visit with our friend MJ (SMA1, 16 yo) and her caregiver Brenda. Friday we all headed up to Mass. Sky, TJ and I stayed with our friends the McAdams and Brenda and MJ went to stay with the Reillys. We all gathered on Saturday and had a BBQ. It was GREAT. I didn't want to go home and either did Sky. When I asked her if she was ready to go home to see Gramma she said NOOOO. She loves my Mom and looks forward to seeing her every day. Just proves how much fun she had.
All the kids looked great (there were 6 of them). It is amazing how big they all got and how much they all are thier own "person".
I can't wait for our next trip!!!
Tuesday, May 4, 2004
Hi! I finally have a little time to let you all know how Skys benefit went Saturday. It went GREAT! We had a dart tournament that started at 12 pm and lasted a long 12 hours. It was over at 12 am. My team came in 1st place! I couldn't wait for it to be over. After shooting darts for 12 hours.. I was ready for bed! We won a duffle bag that was worth about $45 and I love it. I wanted it so bad.
We had a Chinese auction, 50/50's sold t shirts (which we still have and are still selling) and had "games" also. My cousin bartended for free the whole day (and we opened at 10am) and distinguished all her tips to the fund.
About 10 businesses donated all the auction prizes and also one of our very own made something special to auction off... MJ and Brenda, my cousin loved the quilt THANK YOU! All the food was donated also.
My cousin Carolyn and her husband Tony out this all together, with very little help from me. They wanted to do it. They also want to have a few more this year in hopes that we could make Skylars fund a foundation.
Over all not including the items we did pay out of pocket we raised about $2,000. I dont think that is bad for a first time benefit and the bar was small inside.
Also, there will be footage of the benefit on the MDA telethon this year. They are coming back this month to more footage on Sky with her upcoming birthday that is in a month! How exciting is that??
Wednesday, April 28, 2004
Well Saturday is coming fast and we are trying to get everything together for the benefit. It seems that it will be a good turn out. We have 7 teams of dart shooters so far. We were hoping for 8 all together but hopefully people will want to shoot when they come.
We have several business' that donated various items for our silent auction. They are pretty good things to! There is a $50 gift certificate from Marc's Tatoo, Penn State collectable truck (already worth money), Spotlight Hair Salon gift certificate, dart board and list goes on.
I can't thank my cousin and her husband enough (Thanks Tony and Carolyn) for getting this together. I think it will be a great time.
On another note, our friend Sky McAdams (SMA1, 3yo) is STILL in the hospital. It has been over a month now. Please keep her in your prayers. Two more angels earned thier wings. Lindsey and Kassidy both SMA1. Please also keep thier families in your prayers.
Sky has been doing great. She is getting SO BIG! I know I say that all the time but every time I look at her she just seems bigger and bigger. I still cant get over that my baby is going to be 4 soon. She isn't a baby anymore. She is growing into her own person with her own personality. Let me tell you, she is a stubborn girl. That is in a good way though.
Well, thanks for stopping by and if you get a chance please let us know you were here.
Thanks and God Bless!
Tuesday, April 6, 2004
Well I am finally over my illness and Skylar is just SOOO amazing. She had a runny nose for a few days but really kicked this cold in the butt. I was so worried that she was going to get the bronchitis I had but she didn't. She is a weaker type 1 and with the help of her bipap and cough machine, she really cleared up quick and it never got into her lungs. WHEW!!! Thank you God!
May 1st my cousin Carolyn and her husband Tony organized fundraiser for Skylar. It is "The 1st Annual Skylar Tournament". It is a dart tournament. We are going to have auctions, 50/50's and give aways. My cousin is bartending for free and all her tips will go to the "Skylar Saranchuk Fund" that she set up for her. She even got a tax ID # in hopes we could have a few fundraisers a year and make it a national organization. Then we could contribute more to FINDING A CURE!! I am very excited about this.
On another note, two of our very good friends are ill right now. Skyer McAdams (SMA1, 3 in a week!!) just had a tracheostomy and still a bit sick. Our friend Taleah (SMA1, 3 years old) has been ill for a few weeks now and is having a very difficult time. Please keep them both in your prayers.
My birthday has finally come and gone (it was the 4th) so that means I could plan for Skys birthday (June 3rd). I can't believe she will be 4. It is such a miracle! I couldn't be more proud of her will to fight and survive this horrible monster that traps her in her body.
I love my girl so much and I am so proud to be her Mom.
Tuesday, March 30, 2004
Hi everyone!
Sorry it is taking so long for an update there really is not much going on.
There are a lot of SMA kids in the hospital so extra prayers are appreciated. Skyler M, Taleah E, Ryan are only a few. They are all very sick and I am praying they come home well and soon.
Skylar has been doing good. At least for now. I am keeping my fingers crossed. I just got over bronchitis, a sinus infection and I had bronchial asthma pretty bad. I did my hardest to stay away from Sky as much as possible but then again, is it possible??? She seemed to be ok but I noticed tonight that she seems to have a runny nose when I suctioned her and that's how I started. So I pray she doesn't get it. I have had it over a week now. YIKES!! It would be ugly if she got it.
Sp PLEASE say an extra prayer she doesn't.
I will update soon.
Love to all!!
Saturday, March 13, 2004 2:37 PM CST
Well, we laid my Pop to rest yesterday and it was hard and terrible. I know that I just lost the man who was my father figure my whole life. I think that is the way my brothers and I always looked at him.. as our father. My heart just broke for my mother. She has many, many years devoted to my Gram and Pop and taking care of them. It was 6 months to the day that we placed my Gram to rest also.
However, I have never felt so at peace with myself. I cant even begin to explain it. I am VERY upset over his death and coping with it as best I could. The night before he passed, I went to see him. I knew that when he asked me "how much longer do I have?" that he knew it was his time. My rubbed my hand and would not let it go.
I feel that he was telling me it was ok, and he would be ok, and he was ready to go be with everyone that waited for him in Heaven.
At the funeral my uncle asked me to read "If Tomorrow Starts Without My" just like I did at my Grams funeral. As I sat there trying to get the nerve to get up and read, I got this cold feeling that went through my toes, up my face and out through my finger tips. I took it as a sign that he is safe and happy. I got up and read the poem with pride. I wish I could explain to you all how I feel right now. I have never felt this way before. I am empty without my Grandfather but I am ok with it.
Make sense?
Also when we went to his place of rest, and we were watching him be lowered, we noticed that when they dug, they dug a bit over too far and you were able to see my Grams vault. They were placed about 2 inches from each other. That was also a comfort. If you stand at my Grandparents sites and look down the hill, there you see my brothers place of rest. Odd I don't know?? Finally, the funeral director made a video of Pop and it had pictures in it with music in the back ground (like at the conference). It was such a tear jerker!! The last picture was of Pop looking over a 2 month old baby~ which was Skylar! Coincidence?? I think not!! He is just another angel Skylar is lucky to have.
(((hugs))) to you all.
Tuesday March 9, 2003
About 40 minutes ago when I was putting Sky in the car, Grandfather (Pop) passed away. My mom was with him, thank God!
Thank you all for your support. Kim, for listening to me go on and on and Sallie for your comforting words. You are right, I am happy I went to see him last night.. I am happy he called for me a wanted my hand and I am happy I got to tell him I loved him one last time.
6 months and 6 days ago we lost Gram and I guess she still needs Pop more than we do.
Heaven gained one hell of a man!
Saturday, March 6, 2004
Since Sky has been doing well, I thought I would ask for prayers for someone else....... My G-Pop.....
The time is coming for my Pop to join my Gram and my brother Ron. My mom just called to tell me that Pop is NOT doing good and the doctors say there is nothing more they can do. He has a living will and wants no machines. they believe that his hallucinations (sp?) are mini strokes but do not want to put him through any more tests.
Life could be such a kick in the ass! He raised all his 5 children and took care of my Gram (she was sick most of her life). Gram passes away and he has a life of his own and he was doing good. Three months later he gets hit by a car and that's it. He was in perfect health on his way to do the thing he loved to do the most. Play cards~
I am trying to prepare myself but it is bringing me back to seeing the accident. I still have his cane. It happened right in front of my house!!
I just don't get why things like this has to happen to good people.
Please pray for my Pop. That he will go peaceful into the arms of my Gram and Ronnie and most of all God.
Wednesday, March 3, 2004
Skylar has been doing pretty good since getting over her virus. She is growing bigger and bigger every day. Soon she is going to be taller than me. What will I do then????
She is going to get her feet serial casted on Tuesday. This will help her drop foot and once the casts come off we will be able to splint them good. Hopefully, she wont be too miserable with them on.
We are looking into moving. Our building is being sold soon and I hope to have a place before then. I have been seeing someone new for a while now and Sky adores him as he her also. We talked about moving in together so it is a decision I am going to have to make. Who knows?
We go to court on the 23rd for custody/visitation for Sky. I am not worried about that though. I can't wait till there are certain times and days Dave could see Sky, that way I dont have to deal with it. I just want it to be done and over.
I am happy being a single parent to a amazing disabled child. Some people just don't realize what they are missing. Sky and I are secure once again. We are happy with just having each other. Finally, my life is back on track!!!
Wednesday, February 18, 2004
Skylar is FINALLY over her fever/flu or whatever it was she had. I thought it was teeth but I am not seeing a new one in there. I am just happy the fever is gone after 2 weeks.
She has been "talking" a lot more than ususal and I am glad about that.
We never made it to her orthopedic appointment and I was really hoping we did so we could look at her hips.Now we are going to have to wait till April. :o( I know she needa new back brace (TSLO) and foot splints and we can't get them without an order from the ortho doc.
Other than that~ not much going on here in boring Pa.
I will update soon!
Monday Feb. 9, 2004
Sky is not in good spirits no more. I am waiting for the doc to call. I thought Sky was getting better but now she is SICK again. This is the longest shes had a fever in a LONG time. It is going from 100-101 rectally. Her o2 sat has been ok 95nd above. She is usually 100Her heart rate is elevated and she is not doing good with cough sessions. She has more secretions and is very miserable. I haven't seen her like this in a long time. She cried all morning her poor eyes were red and puffy.
This is the longest she has had a temp ever.
We are supposed to go to the ortho Thursday but it isnt looking good
Sunday Feb. 8, 2004.
Skylar is still sick. She has been off her antibiotics for a day now (it was a 10 day dose) but yet still has a fever. It is running from 99.5 to 101. She usually runs around 97 so this temp is high for her. She is a bit flush also. She isn't showing any signs of distress (THANK GOD) so I am hoping maybe teething????
We had Make A Wish here last week. Skys wish was to go to Disney. However, they will not let us drive. We can't fly with Sky so they want us to take AmTrack. I don't want to so we might have to change her wish.
We are hoping to go to Ohio again in March for a SMA fundraiser. We went last year and had a great time. Dave was with us then and since he isnt now, I dont know if I will be able to afford the trip. I am praying I do though. Sky and I need a vacation.
One last question.. IS SPRING ALMOST HERE?????? It is so cold and I cant stand it. We are waiting for spring and tomorrow wouldnt be soon enough.
All our love!!
My Perfect Child
As my daughter was born, I wanted her to be perfect.
When she was a baby, I wanted her to smile and to be content
Playing with her toys.
I wanted her to be happy and to laugh continually instead
Of crying and being demanding. I wanted her to see
the beautiful side of life.
As she grew older. I wanted her to be giving instead of selfish.
I wanted her to skip the terrible twos.
I wanted her to stay innocent forever.
As she became a teenager, I wanted her to be obedient and not
Rebellious, mannerly and not mouthy. I wanted her to be gentle,
Kindhearted, and full of love.
"Oh God, give me a child like this," was often my prayer.
One day He did.
Some call her handicapped…I call her perfect!
Saturday, January 31, 2004
Skylar has been sick as of Wednesday. I am thinking it is between a cold and bronchitis. I noticed in the morning her secretions were yellowish. Called in for an antibiotic right away and started her on Zithromax. Wednesday night she had a good drop in saturations (her O2 level). She was about 80nd hanging there for quite a bit. So out came her cough machine (helps her get a productive cough since she is too weak to cough herself). She still would not come back up. I used oxygen with it then she started to come back to normal levels (93r above when sick). She also started with a fever. Thurday she still has the fever and at night with her nurse she had a drop in saturation again 79Jackie (our nurse) got her back to norm with no O2 required. Thursday night she fell asleep at midnight and slept till noon next morning. Friday, still has fever and just not too happy. Saturday (today) fever still (about 99-100 so it is starting to come down) secretions are normal color and just a slight increase of amount. Seems a bit more happy, so hoping that we are on the road to another success without a hospital stay.
Please keep her in your prayers.
Jan 24th, 2004
Well I am trying to get Skys page a bit updated but it dont seem to be working that way. I really have to get a recent picture of her on here so you could see how much she has grown!
We are taking Sky to the ortho to check our her hips. I just want to see where we stand with them. When I change her or stretch her the seem to be popping. She doesnt seem in pain though so I am not too concerned.
I finally I would say after almost a year found a position where I could hold Skylar again. Of coarse she has to be on her bipap but I dont care about that. It felt so good to hold her. We sang, watched and played Blues Clues and Dora and I had a crying moment of "why her?" I cant even tell you how happy I was to have that moment with her knowing I could hold her comfortably again. Even though she isn't too much smaller than me. That is getting hard!
Gosh do I love my girl!!!!
Jan 20, 2004
This year has just started out so rough for us and we are still trying to get back in the swing of things.
Skylar has been doing well. Minus the bloody nose due to how dry our house is. She was supposed to get her RSV shot this month but they want me to bring her into the office and that is out of the question. We have been fighting to even get it approved since November.
Skylars dad still hasnt really been coming around and is lucky to even call and ask about her once a week. I am really feeling bad for her because I really wonder what goes through her head when he is around for some time and then gone. I don't think he realizes that it isn't only affecting me but her also.
We will manage somehow. I miss him but I cant let this keep happening to Sky or myself.
We were supposed to go to Ohio for a fundraiser in March but he will not go with is and also will not go to Skylars Make A Wish trip with us in Florida. I was really looking forward to that.
On another note~ My grandfather is improving. He started going to the rehab center and they are getting him in a wheelchair now. He still gets tired but he is making progress. So that is something good so far this year.
Thanks you ALL that has been helping my through this struggling time. I owe you all the world. I have such great friends via internet and I really can't thank you enough.
Tuesday, January 13, 2004
Sky has been doing good. She is getting so big I cant even get over it. With the help of pulmicort she is slowly coming off her bipap. Even if it is for an hour, I am happy with that.
Dave hasn't come to see her in about a week now. I talk to her about things and she really does understand, but I don't think he thinks so. I know she misses him and so do I.
Skylar loves her tumbleforms chair. Everytime she is in it she falls asleep. We are going to have to go another size up soon, cuz she is just so darn tall!
Our nurse Denise quit today. I am so bummed out. That is even more fuel on the fire. She got another job offer that she cound't pass up. She was here Tuesdays, Wednesdays and Thursdays, now they dont have anyone. I work Wednesdays and shoot darts Thursday so I am really hoping they find someone quick so I don't have to quit.
UGH>>> the soap opera continues. :o(
Wednesday, January 7, 2004 11:02 AM CST
Gosh, I am so far behind! There is too much going on here I guess.
First all our prayers to all the sick kiddos.
Now for our "soap opera" life.... Sky has been doing good. With the help of pulmicort she is actually coming off bipap a few times a day sometimes for a short time sometimes for over an hour. It all depends what kind of mood she is in. The doctors office called today and said the only way for Sky to get the RSV shot is if I could bring her in. Other than that insurance wont pay for it. She is been doing so good this far, I am debating now of even getting it for her. I dont know~ I weighed her the other day and she was 21 pounds!! Who could believe that???
Dave is back to being a major jerk and it has really stressed me out to the point that I am at the end of my rope. Our court date had to be rescheduled and then he dropped it, so now I am taking him. I still owe the lawyer about $200 but now that I have to do all the filing for custody ect.... it might be more. He was coming back around and playing Daddy for the past two months, but now that he found someone else that shows interest in him, he dropped off the face of the earth again. It truly affects Sky and he doesnt realize it. He was supposed to come see her Sunday but opted to go to the new girls house and spend time with her and her son for his birthday (I think he is 4?) So that was a slap in the face. Then on Tuesday I told him to see her and he was supposed to be here at 10am and didnt show till 1. It makes me so angry not only because he does this to me but me does it to Sky also. I am sure she thinks.. "OK Daddy was here for 2 months, and now he is gone again." And what if she thinks it is her fault???
My doctor wanted to admit me for the night to the hospital for supposively being malnourished (?) I have dropped 8 pounds in like 6 days. When I get stressed I dont eat. I dont know why but I guess that is how I cope. Dave has really made me feel like a fool this time and the thing is I never even hooked back up with him! Yet, he drilled in my head that everything was my fault and "I had no one to blame but myself". I think that is stuck in my head. I feel that besides Sky I have no direction in my life.
It is hard for me to talk to people about this and I am sorry you all are the lucky ones. As much and as close as my mom and I are, I cant out this burden on her. She stopped up last night and yelled (well not really) cuz I looked as white as a ghost.
AS far as my Grandfather goes~~ he is doing pretty good. Now though he is starting to get depressed from being in the hospital so long and talking like as if he is going to die. He is giving the "If anything happens" speech. He was such an up and at um person being so bed ridden for a month is really bringing him down.
To top everything off, my Dad got married on New Years Eve and I didnt find out till the next day!!! We will not even get into that.
So as you could all tell, my new year is starting off all wrong. Sorry for the novel and spilling my guts but I feel like I am going to explode.
Thanks for listening.
Friday, December 19, 2003
Well, Christmas is approaching very fast. Too fast for me. I haven't really been in the "spirit" since my G-Pop got hit but at the same time, I am SO thankful that Skylar is seeing her 4th Christmas. When she was first diagnosed, they told us we would be lucky if she sees her 1st Christmas. She has brought so much joy to my life. Although it is rough sometimes and at times I am selfish and ask "why her?" she is worth every effort I had to make and everything I had to give up. I wouldn't trade her for the world. If I had the choice, I would do it all over again. She is a truly amazing little girl that taught my so much about life. She is my hero, my strength and my pride.
Merry Christmas everyone. Have a safe and happy holiday.
Pray for a cure in 2004!!!
Saturday, December 13, 2003 9:21 AM CST
There really isnt too much change in my Pop. His pelvis is shattered bad and he might need a hip replacement in time. They don't want to operate right now but send him to John Heinz rehab to hopefully get him a bit rehabilitated first. They had to call a cardiologist up yesterday because his heart rate shot up to high 150's and they didn't know if he had a heart attack, or the stress or meds. Then last might about 8 my Mom went down because it happened again and they thought he was bleeding internally but they didn't find anything on the scan so they think it was an air pocket. He is still in lots of pain but yet still manages to crack jokes at the nurses and us when we are there. I am still having a hard time sleeping because every time I close my eyes I see him on the road. So I guess I figure if I don't sleep I wont see it. Like I am afraid to close my eyes. I also cant stop thinking of the whole "scene". It is really starting to get to me.
That is my GPop update for now. Thanks for the prayers and caring.
Wednesday, December 10, 2003
I need to ask for some prayers. We need them for my Pop. He is the rock of our family. He got hit by a truck this evening right in front of my house. He was just moved to CCU. His blood pressure is up and down, broken pelvis and now they see a bit of bleeding where he got hit. He is 83 (for some reason I thought 87). I was out getting gas and when I came home I called down the bar (where I work) and they told me to hang up, at the same time a guy went running down the street so I knew something was up. I went down and saw my Pop lying on the road with my Mom above him. I ran over to him and bent down with him and held his hand and kept talking to him. I rubbed his head and asked him of he was in pain and told him to just keep looking at me and not to move at all. The paramedic (which was a friend of mine) told me to make sure he didn't move. When they strapped his neck, and turned him that's when he yelled. So off to the ER. My Pop is such a comic he wanted to know where his cane was!!!
God love him! I love him to death and cant imagine this even happened to him. For me to be the brave one and be by his side while he was just hit by a truck was hard but I am glad I did. my mom let me.. she just went through a lot with my Gram passing that I felt the need to step up.
So pray HARD for him for a recovery PLEASE!
Love to you all.
Sunday, November 30, 2003 10:28 PM CST
Skylar update! Sky has been doing good. Thanksgiving was nice. This was the first year without my Gram so Skys Gram, uncles, Grandpop and Great-Pop came to our house for dinner. Of coarse my Mom cooked though so that made it extra nice.
We got our Christmas tree today. Sky is looking forward to help decorate it. Christmas is coming too quick for me this year!!
We hope you all have a safe and happy seaon!!
~~((hugs)) ~~
Sunday, November 2, 2003
Sky has been sick. Fever wheezing terrible nose and all. She started with Zithromax and is on Pulmicort and Xopenex. Please keep her in your prayers. This is our first major issue this season. I think (and hoping) it is just a sinus infection. She is so proned to them. we are on day 3 dealing with it, but I think with the help of the antibiotics we might have caught it pretty early.
Sky dressed as Nalah from the Lion King for Halloween. We didn't take her out, but a lot of my family members came to see her and she got lots of treats. I promised her as soon as she's done being sick, I'll get brave and take her shopping.
Since Sky and I are on our own again, we are adjusting fine. I am trying to take some direction in my life and trying to get things back to normal with Sky and I. My Mom comes visits her everyday and Sky loves it. It's almost like she knows what time she is coming cuz I'll say "guess who's coming" and she tries to say Gram but it comes our "aaaaam"
There are so many days that Skylar is so quiet and I wonder if she could even talk, but then I get the days where she just talks and talks. That's Sky though, she is stubborn and I love it.
Monday, October 13, 2003 8:53 PM CDT
Skylar has been doing ok. She started to come off her bipap a lot but mow with the move and adjusting to things she wants it more again.
We are adjusting ok without Daddy around. I know she misses him but she will be ok I am sure.
She finally has put on more weight. She is about 20.5 pounds and almost 40 inches long!!
Saturday, September 6, 2003
Hello to you all. Yes I am still here!!
Sky has been doing pretty good with some days off pap and some days still wanting to be on.
I wanted to tell you all a story about my Gram. Besides my mother she was the one person that truly believed in me. She always believed that if I were to give up on something, if I was to try once more, I'd accomplish it. Usually she was right. Like a best friend to me.. she could be the biggest pain in the rear but she always made me smile and laugh. She cared so much for Sky (and all our kids) and always said special prayers for them throughout the day. She loved to hear my stories about the kids. She was such am amazing woman.
On Wednesday Sept 3rd, my Gram passed away with her family by her side. We watched her struggle till the end. It was not a pleasant site to see, and I could hardly hold myself together watching her struggle. I couldn't believe my Gram, a woman who was my 2nd mother was now gone from earth. Free of her broke bones, osteoporosis, tumor, pain and suffering.
Since Wednesday I have been beside myself. Cant even sleep well. Today we laid my Gram to rest. I read the poem "If Tomorrow Starts Without Me" and I really believe that is what she would have said to us all. I said my final farewell (for now, until my afterlife) and went to my car.
I seen something outside that I haven't seen in a very long time...... A butterfly.... that circled my car and other members of my family for about 10 minutes. I smiled and thought of sweet Mia, the other angles and my Gram. It really made me feel good.
Gram is now with my brother in Heaven and I am so thankful that God didn't make her last hours be too long. She was a very religious woman and I know she is happy now.
She will be missed very much.............
Thanks for listening....
Friday, September 5, 2003
Skylar has been doing pretty good. She has days she will come of her bipap for hours and days she wil not come off at all.
On a sad note, my Gram passed away on Wednesday September 3rd with her loving family around her. The shock is overwhelming for me and I cannot believe she is gone. I am happy she is free of pain and suffering but she will be missed so much. She brough so much joy, laughter and caring to my life, I am so thankful that she was picked to be my Gram.
She was such a loving, caring and devoted person. She prayed for Skylar and all the sick children throughout the day. No matter what life brought to her, God was her best friend during good times and bad.
She loved her family so much. Pop will be so lonely without his wife of 63 1/2 years. That worrys me also.
All we could do is pray, that he is ok with her leaving. I pray for his strength without her.
Thanks for taking the time to read this...
Friday, August 1, 2003
Hello to all! I am pleased to say that Skylar is starting to feel better FINALLY! She is still having a hard time coming off her bi pap but slowly and surely she will get there. Thank you all for you love and support along with cards while Sky was so ill. Her lungs have finally cleared. She is 100% on her pap and she is more alert than she has been in a month. Her color is back (not so pail anymore) and her heart rate is back to its norm. Once we get her weaned off bi pap, I will be one happy Mommy!
Thanks again!!
(((hugs)))
Love to all,
Tracy and Skylar
SMA type1 ~~ Born June 3rd, 2000
Skys links.....
www.our-sma-angels.com/Skylar
www.skylarshopechest.com
www.smilequilts.com/skylar.html
www.caringbridge.org/pa/skylar
www.hugsandhope.com
www.quiltsoflove.com/quilt/skylarS/skylarS.html
Sunday, July 27, 2003
Well, Sky crashed the worse ever since 2001 last night. HerO2 dropped to.. well 32% was the last we saw. We did have to call 911 AGAIN because the cough machine just didn't seem to be enough to get her lungs to inflate (we are pretty sure it was a plug). But low and behold! After not giving up and coughing way~ her chest exploded with air. She gradually started to come back up O2 wise. However she did not look good at all. She wasn't responsive, her eyes rolled and she was beyond pale. I suctioned her again and get a secretion out like a ball of glue (thats what I think was the plug). Then she started coming around and getting her color back. She even waived to the paramedics. So right now she seems fine again.
I've been so depressed thinking of how much I hate SMA and the reality of it. On the same note I am so thankful for the NIV protocol and Dr Bach.. not to mention Skylar and her will to survive and fight this horrible monster keeping her inside of her body. She loves life though and she has a good one! So if she's happy, I am.
Wednesday, July 23, 2003 10:23 PM CDT
Skylar is home and doing well. We are now trying to wean her from bipap. From her being ill and on it for 3 weeks.. she is used to it. So now this is our next step with her. Pray she has an easy time and is off soon so I could see that beautiful face behind her mask!! :o)
Monday July 21, 2003
Hi everyone. Skylar is in the hospital. We had bad thunderstorms and lost power...We were out and the nurse couldn't get the backup battery going, so Skylar crashed pretty badly. We got home...and one of the paramedics was a guy from my softball league...they had been preparing to intubate...but once they got her BiPap going, she was okay. She is resting on BiPap, SATs at 100...but her right upper lobe is a bit junky and wheezy. Her left lower, though - the one that's been closing up - sounds better tonight than it did this morning. Go figure! We asked for another chest xray and blood work, so they'll be there overnight at least. But right now, Sky's doing fine...
Monday, July 21, 2003 4:20 PM CDT
Well, we thought we were over the hump with Sky but I guess we were wrong. Her lower left lobe is now again diminished! This is going on 3 weeks. Three weeks of bipap, extra coughing, extra neb treatments, suctioning. We were ready to wean her from her bipap (machine that helps expand the lungs) but now that is impossible to her lung reopens again. Her doctor wont be in until Wednesday so hopefully she doesn't get any worse. My girl is amazing though and I know she will do fine until then.
I am exhausted and been kind of bummed. It has been well over a year since Sky has been this sick. I just want to see my girl off her pap and back to her normal self again!!
Monday, July 14, 2003 9:13 AM CDT
Well we are on week #2 of Skylar loving her bipap (machine that helps expand her lungs for a fuller and normal breath). She is very diminished in her lower left lobe. I am going to finally break down and get an xray done so I could see what I am dealing with. There is definitely something there, just not sure what yet. She has been on Zithromax for 6 days now for a 10 day dose. Doesnt seem to be doing a thing and that med usually knocks whatever is going on out of her.....Please pray for a more speedy recovery.
Sunday, June 29, 2003 11:42 PM EST
Boy, I say this every time but I am TERRIBLE at being on time with updates.
June was a busy month or us. The highlight of the month was that Sky turned 3!!!
Then on June 18th through the 23rd we went to Washington DC for the FSMA conference (Families of SPinal Muscular Atrophy). It was so good to see all the kids of all different types . It felt amazing knowing that you were with a bunch of people that you didn't have to explain the bipap, pulse/ox all the other equiptment to. We had such a good time and Sky loved being with all her friends. On Sunday we went out and about in DC with some of our friends. We saw the White House, Lincoln Memorial, Washington Monument, Korean War Memorial, Vietnam wall gosh we saw SO much. Dave and I also got brave and took Sky on the metro rail. Skylar saw more than I saw my whole life and she is 3 an Im 26!!
I wish they had a real MAJOR breakthough for a cure. They did say however that they hope for a trail within the next year. I sure hope so. I would do ANYTHING to see my girl run and play and even eat a piece of chocolate.
We did get our pictures developed and as soon as they are up on her site I will be sure to let you all know.
Thanks for stopping by and I'll try harder to post updates sooner!! ^i^
Friday, June 6, 2003
Thank you all so much for the birthday wishes, cards, summer wardrobe, balloons, small computer-like toy and everything else Skylar has received for her birthday. She loved them all. Friday was when the newspaper guy come. Sky "talked" to him for about 5 minutes then closed her eyes and PRETENDED to sleep! She would open her eyes about every 5 minutes to see if he was still here and then quickly shut them. She is a piece of work! We had her party on Sunday, and Sky was the typical Sky. She slept for 3.5 hours during her party. Right after she had some cake, she fell fast to sleep. So I have to open her gifts (most were in bags) put them back in and let her reopen them when she woke up. By that time, everyone was just about gone. Yesterday (her actual day) she wanted pap all day. She only came off for about 1.5 hours. But hey, it was her day and if that is what he wanted she got it! I still can't believe my girl is 3!! There were so many times I thought for sure we would never see her 2nd birthday let alone her 3rd. But we did and she is amazing and such a fighter. I am so glad God chose me to be her Mom. So once again.. Thank you all so much. You helped make her day even more special. Lots of love and hugs, Tracy and Skylar ~ SMA1, born June 3, 2000 www.our-sma-angels.com/Skylar www.caringbridge.com/pa/skylar Love to all, Tracy and Skylar SMA type1 ~~ Born June 3rd, 2000 Skys links..... www.our-sma-angels.com/Skylar www.skylarshopechest.com www.smilequilts.com/skylar.html www.caringbridge.com/pa/skylar www.hugsandhope.com www.quiltsoflove.com/quilt/skylarS/skylarS.html
Tuesday~~~ June 3, 2003
WELL WE DID IT AGAIN. OUR GIRL IS 3 YEARS OLD TODAY!!!! 3 SHE IS 3!!!! WHEN SKYLAR WAS DIAGNOSED WE WERE TOLD SHE HAD ABOUT 8 MONTHS TO LIVE. WE BELIEVED THEM AND PREPARED TO LOSE OUR LITTLE GIRL. NOW 32 MONTHS LATER SHE IS CELBRATING HER 3RD BIRTHDAY. COULD YOU TELL HOW EXCITED I AM?? I AM SO PROUD OF HER WILL TO LIVE, FIGHT AND SURVIVE. SHE HAS BEEN THROUGH SO MUCH IN HER LIFE, SHES BEEN SO BRAVE, SHES BEEN MY LITTLE HERO. I AM SO THANKFUL FOR HER AND I AM SO LUCKY TO HAVE HER AS MY DAUGHTER. SHE IS THE MOST PERFECT, UNPERFECT CHILD ANYONE COULD ASK FOR.
THANK YOU DR BACH FOR LOVING MY CHILD. THANK YOU UNCLE LOUIE WHO CONSTANTLY PUTS UP WITH ME. WITHOUT YOU TWO, WE WOULD NOT BE WHERE WE ARE TODAY. THANK YOU TO EVERYONE WHO HAS BECOME PART OF OUR EXTENDED FAMILY. I COULDNT DO IT WITHOUT YOU. YOU KNOW WHO YOU ARE.
SKYLAR SENDS YOU ALL BIG (((HUGS))) AND SAYS SHE NEEDS TO REST UP TO PARTY HARD!!
Tuesday, May 20, 2003 9:59 PM CDT
Hello.. Sky went to see her pulmonary doctor today (first time in over a year). First off, he was beyond happy to see Sky. He couldn't get over how long she has gotten (37 7/8in). He was amazed. He also liked the fact that she was a whopping 17.8 pounds. He said that her overall outlook pulmonary wise was excellent and she fooled tons of people. He was happy with the way she looked and the whole overall look of her.
The only concern he had with her was her scoliosis. He is afraid of it compromising her respatory wise. He knows that surgery is not an option though for quite a while. Sky did her her new TSLO ad we are quickly working her up into wearing it 23 hour a day. YES 23 HOURS!! He also hear a murmur in her heart but didn't seem too alarmed by it. So we had an EKG done and we will take it from there.
Overall it was a good day at the docs. Odd, but it was! Dr Perez is such a great doctor. I totally lucked out with him and his knowledge of SMA. He even met Dr Bach before he had Sky as his patint.W even had a quick visit with the nurses who take care of her (No we didn't take her into the ward). They were so excited to see her. Its been a long time (knock on wood) and we like it that way.
So that was our day. Now we are waiting for 2 more weeks when Sky turns 3!!!!!
Friday, May 9, 2003 1:24 PM EST
As always, sorry so long for an update on Sky. She has been doing great! She needed her bi-pap a lot the other day though due to humidity. Shes up to 5.5 teeth (the .5 is a tooth just about up). We are still trying HARD to get her to gain some weight. Sky, Dave, and I are going to the FSMA conference is June down in Washington DC. We are looking forward to that. There will be many people there that I havent met yet but I am really looking forward to getting to FINALLY meeting them!! We will be gone June 18th-23rd. Other than that.. Counting down the days till SKylars 3rd birthday! Truly amazing!! Lets pray that at the SMA conference there will be some good news on hopefully a break through for a cure for SMA.
Friday, April 18, 2003 12:44 AM CDT
Hi everyone and yes we are still alive.
First off~ Heaven has gained another angel. On April 2nd, little Steven Garland (SMA1, 16 mo) earned his angel wings. As always, our loss is Heavens gain. Please keep his family in your prayers.
HAPPY BIRTHDAY!!
Colin Oneill (SMA1) ~ April 4th
Skyler McAdams(SMA1) ~ April 12th
WELCOME TO THE CLUB OF TWO YEAR OLDS!! HOPE YOU HAD FUN, FUN, FUN!!
Jenson Baldwin (SMA3) ~ April 28th
HAVE A GREAT 8TH BIRTHDAY!!
Well, as far as Skylar has been doing.. shes been great! She cut another tooth and I am still trying to grasp the fact that she has teeth now. I could hardly believe she is going to be 3 this June. Who would have thought?? She is such a long girl! We call her our little bean pole. She is so long and skinny. We are trying to get her to gain some weight but gosh~~ that is a challenge. Skys "Aunt" Liz is wanting to fatten her up.. so we are REALLY trying.
It is official, a whole year without a hospitalization (KNOCKING ON WOOD). Sky is old enough now to let me know if she needs to be coughed and if she needs her bi pap more, and that is so helpful to me. She has been become such a Daddys girl lately. HELLO... what happened to me???? That's Ok though.. It is nice to know that someone besides me could manage her care finally during the day so I could have some time for myself.
We are scheduled to see Dr Perez in May. It will be our first trip to Danville in quite some time. I am sure Dr Perez misses us dearly.. LOL.. Maybe he misses me attitude and my straight forwardness. In all honestly, I am looking forward to seeing him. He is such a great doctors and I am truly blessed that he took Skylar (and myself) under his wing and became her pulmonary doctor. He is a man I will never forget my whole life. With all my heart Dr Perez.. thank you!
Well, we are off for a road trip very soon. We are heading to Mass. to see our good friends the McAdams. Can't wait!! I will be traveling with Skylar myself the whole 5 hour trip. I am a bit nervous but I am sure she will be OK. Besides we are taking Grammas "party van" with the tv/vcr combo.. so I think we will be set!!
Last but not least.. HAPPY EASTER!!!! Hope you all have a great day!!
Lots of love and hugs,
Tracy, Dave and Skylar (SMA1, June 3, 2000)
www.our-sma-angels.com/Skylar
www.caringbridge.com/pa/skylar
www.skylarshopechest.com
Tuesday, April 8, 2003 1:54 PM CDT
Well, we moved AGAIN! I absolutely hate moving but I guess you have to do what you have to do. Sky is adjusting fine and turning in to such a Daddys girl now. Dave does great with her now and it helps so much knowing I could go do what I have to, and be OK knowing someone else is there with Sky and could handle her. It is such a relief!
Sky has been vocalizing more and I am keeping my fingers crossed that she will start to spit out words soon besides "noooo" "yeahhh" and "huh-uh". But they are better than none.
We finally have a new nurse. She doesn't work night shift (BOY how I miss that) but she is here from like 530-11pm. As soon as I get use to her and "train" her with Sky.. I will be making use of that time.
On a sadder note.. Heaven had gained 2 more SMA angels... Steven (SMA1, 16 mo) and Kaitlyn (SMA2, 13 yo) both went Home to our Father on April 2nd. Please keep them in your prayers.
Wednesday, March 26, 2003 6:04 PM CST
Sky has been doing great! She has been babbling alot these past two days, and I love it. Her "yeah"'s are becoming more louder now and that is her favorite thing to say. Much better than her nuh'huh's (no). Her sleeping habbits stink lately. She is wanting to be up at 6 & 7am and she used to be a 9-10am girl. It's killing me.
She is getting her canine teeth in (I think thats what they are called) and boy are they a bugger! But I just love to see them teeth! For those who don't know~ Sky didn't get her first tooth till right before Christmas ( 2 1/2 years old) now she is going on her 6th tooth. So it excites me.
We still love her wizard and now that the weather FINALLY broke~ she gets some good use out of it.
A very good friends of mine stopped by about an hour ago and told me that her re-enlisted in the army!!! He WANTED to go to Iraq. He was also in the Dessert Storm. But I cant believe he did that!! I am pretty bummed (and VERY worried) about the whole situation. But he wanted to fight for his country again and I just pray he comes home unharmed. He leaves for Iraq April 17th. He doesn't have to go through training again since he just got out a few years ago.
Monday, March 10, 2003 3:16 PM CST
Well, after an 8 hour drive that was WELL worth the drive. We arrived home about 9 tonight. We had SUCH a great time, and I am so happy I decided to go.
It was so great to finally meet Laura, Amy and Beth (along with Kaylee, Lily, Emma and Nick) and it was so good for Sky and Kalair to be hanging out again. We loved to see Annette, Madison and Michelle again also. These are all girls in our extended SMA family.
Of coarse Sky had to have her pap on most of Saturday (come to find the next morning it was another tooth!!) but she was SO happy (and off pap) when she was lying with Madison in the princess tent with all the girls.
Annette, Michelle and family did such a great job!! The presentations were amazing and I felt the tears wanting to come so bad.. (didn't we all???) "Madison's Song" was amazing, it was the first time I heard it.. And I would love to know the other song that was played with the kids pictures.
Dr Burges (OK I cant spell.. I am tired, but he is a researcher for SMA) from what I saw heard and saw of him is a great guy, and I have tons of faith in him. He really enlighten me about the "non progression" of the disease and all. SMA is very controversial. Some doctors say it is a progressing disease..some say not.
I cant express my gratitude when it came to making all the SMA families to stand for recognition. That was sweet.
Madison is amazing! She is such an inspiration to us. She is 6 with SMA type 1. We cant wait till next year. I recommend anyone who doesn't mind to travel to GO. Like I said we drove 8 hours to be there and I am SOOOO happy we went. (Although Liz and I got loss Saturday night.. Michelle, I think we got the directions wrong ;o) )
I could also go on and on.. But I am beyond T-I-R-E-D!!
Also, I wanted to thank everyone who helped contribute to Skylar and I this week. Marsha had sent us something to help us get by. It means so much to us and we wanted to thank you from the bottom of our hearts,
(((hugs)))
Wednesday, March 5, 2003 10:21 PM CST
Wow! What a rough day Sky had! I don't know what it was. When Sky woke up today she seems just fine. She never likes to be bothered for at least an hour or two after waking, but once that passed and I started to get her "morning routine" started she through such a fit. She started to get junky and desat (Lower o2 saturations). She dropped so quick to about 70 and her color was just about grey. Dave ran to get the cough machine while I suctioned and held her bi pap on. This continued for about an hour. After about an hour her heart rate stayed about 170's (she usually is about 110-120) and she just seemed to struggle. A friend of mine and I were talking about her diet and if it could be something that I added and we came up with two things we should take out of it. So I did. Sky took a nap (she has a fever of 100.7 at this time) with the help of Motrin, and really seemed to calm down. After her 2 hour nap..she is just as spunky as usual!! Shes singing to the TV right now.
I am thinking this was just a fluke due to her not agreeing with something in her formula.. We are leaving Friday at 6am for Ohio. A 7 hour trip...UGH!!
Love to all....
Friday, February 21, 2003 5:55 PM CST
What a day we had!!!! Dave and I decided to take Skylar to see "Sesame Street Live". I think it was the best decision I made in a while now. Skylar was SOOO happy. At first before the show started she through a hissy fit but once Elmo stepped put on the stage her eyes were so wide and bright. Looking at her, I had tears in my eyes. She is such a typical 2 1/2 year old. She doesn't vocalize too much but boy was she talking today. We were so close to the stage that if we were any closer, we would have been on their laps.
The show lasted about 1 and 1./2 hours and Sky didn't need her pap till about the last 15 minutes or so (Sky usually doesn't go that long without a good breath). the only reason she needed it was because she was tired and wanted it. We ,ade sure she stayed up though. ;o)
I watched all the other kids running, clapping, laughing, ect.. and I thought to myself, you know what??? Yes, that would be nice, BUT I have the most perfect daughter in the world tat I wouldn't trade for a thing.
It is days like these, that I forget about all Skys hard times and realize that I DID make the right choices when I had to. I just love her so much and I cant even imagine loving someone any more than I love her.
The plus is that we were allowed to take pictures. Of coarse we couldn't get any of Sky with the characters, but we did get some good ones.
I'll be sure to share when we get them tomorrow.
Thanks for listening.... I had to share my day...and I was so happy that Sky had her Mommy AND Daddy to share it with.
Monday, February 17, 2003 12:59 AM CST
SNOW, SNOW AND MORE SNOW!!! Is spring ever coming??? I cant even get out of my front door today. YIKES!!
Anyway~ we decided to take Skylar to Miracle for Madison's fundraiser in Ohio. I am excited. Madison is a 6 year old SMA type 1 girl and she is so amazing!! Our good friends Kalair (type 1, 3 years old) and Lily (type 1, She'll be 2 in May) will be there also. I cant wait! It is a 7 hour trip so keep your fingers crossed Sky will like the ride and behave herself.
Sky has been doing good. I am so thankful to God this winter season! She has been on her bi pap (which she loves) a bit more than usual but if it helps her stay healthy thats ok with me.
On another note, Please keep our friend MJ (SMA 1, 15 years old) in your prayers. She has been ill for quite some time now and she now has pseudomonis! Sky has that a few times and it is NOT fun at all!
God bless you all and thanks for the constant prayers and support. Love to you all,
Tracy, Skylar and Dave
Thursday, January 23, 2003 at 09:48 PM (CST)
All I could say is ...... Kudos' to you all with 1+ children! I had to baby-sit my girlfriends baby today and oh my gosh!! I am shot!! The baby is only three months but wow..you cant even put her down. I was like Mommy dummy! You had to see me trying to change her diaper. A child that could move like that~~~ She was stronger than me!!
Ive been having a lot of baby fever lately.. but I think I will wait a few more years.
Tuesday, January 21, 2003 at 07:08 PM (CST)
What a bummer.. Steelers arent in the Super Bowl!!
Anyhow~~~ Sky has her RSV shot today. Quite miserable I must say.
She hasn't been sleeping well the past few nights.
I think it is because those darn teeth of hers.
I wanted them to come in SO bad.
Now they are and I wish they were more gentle on her.
I measured her today. She is about 37 inches an 17 pounds (hey, that is GREAT for her).
Thats about it. Other than that, Sky is such a little angel and I am so happy to be her Mommy!!
Tuesday, December 24, 2002 at 10:04 AM (CST)
MERRY CHRISTMAS TO YOU ALL! THANK YOU ALL FOR LOVE, CARE AND SUPPORT THIS YEAR. IT IS GREAT KNOWING THAT THERE ARE SO MANY OF YOU THAT CARE.
HAVE A SAFE AND VERY HAPPY HOLIDAY!
Thursday, November 28, 2002 at 06:40 PM (CST)
Happy Thanksgiving to you all!! I hope you had a GREAT day!!
This morning I thought we were having a trip to the ER again. Sky retained
urine!! UGH!!!! :o(
I sat there and said to myself NO WAY is she going. I had it in my head
that I WILL do it. Well guess what??? I succeeded! I straight cathed her
all be myself. I made myself proud. ;o)
Again she was constipated, but after the cath.. she went and has been fine
ever since. Praise the Lord!!!
Thursday, November 21, 2002 at 11:10 AM (CST)
OK, I am asking for any help I could get. I am starting an organization. It will be called "Skylars Chest of Hope." It will benefit newly diagnosed children with SMA as well as other life threatening disease. The children will get a box from the chest that will contain, toys, pillows stickers,ect.. Little things for a lift me up for them and there parents. What I am asking from you if you are able, is to donate new or used toys (in good shape, material for me to make pillows, or anything a child might like. I guess it will be like an Andrews Toybox. I know when I got Skylars first box it really brought a smile to my face knowing people do care. I am in the process of making a web site and I will let you know when that is up and running. Well Laura is. ;o)Let me know your opinion if you all prefer www.skylarschestofhopes.com orwww.our-sma-angels.com/skylarschestofhopes (more recognition to SMA angels. Any help would be appreciated and please pass it on.Skylars story is atwww.our-sma-angels.com/Skylar
Please help me put a smile on a child's face. :o)Donations could be made at
Skylars Chest of Hope
c/o Tracy Murray
504 Sheridan Manor
Wilkes-Barre Pa. 18702
"Together we WILL make a difference"
Love to all,Tracy
Mommy to Skylar SMA1, 29.5 mo
www.our-sma-angels.com/Skylar
As for Skylars update.. I am always so far behind. :o(
Skylar has been doing very well (knock on wood). She FINALLY broke a tooth
through and one other is almost through also.
I had bronchitis twice this month and Sky didn't even get a sniffle. I almost
died! Her immunity has really picked up from last year! I just pray it lasts.
She seems to have allergies now. We got her a nasal spray and it is really
helping a lot.
She has a new kitty~ Her name is Sabrina. Sky loves her...
Sky had her first RSV shot today. She wasnt too happy about that. She got over it quick .:o)
That's about it for updating..
Hope all is well.
Take care and God Bless!
Saturday, November 09, 2002 at 12:58 AM (CST)
My friend posted this for me on a SMA support site. I thought I would just copy what she posted. Thanks Kim!
Okay, guys...you're not going to believe thisone..but Tracy just called and asked me to post that they think Sky might have a hernia! Tracy went to change Sky's diaper a little while ago and notice an area near the bladder that looked swollen. She tried perssing on it to see if Sky needed to pee and nothing happened. She called the doctor because the area (the size of her whole palm) remained enlarged and he said it sounds like it might be a hernia. She called "Uncle Louie" and he said that it can sometimes happen in the area of the intestines due to some type of problem witht he g-tube. Tracy is now waiting for Pam, the nurse, to arrive and they are taking Sky in to have the doctors look at her. Boy, that poor kid just seems to get it all. So far, her SATs are fine, but she's working a little bit harder and does seem uncomfortable. So, please keep Sky and Tracy in your prayers...and I'll keep you update...
Monday, November 04, 2002 at 09:56 PM (CST)
I believe Skylar has her first official cold. Her sats have been good but she isn't coming off bi pap to well. I did manage to get her into take a bath and I could feel all the mucus she had in the back of her throat.
It seems that this time of year, she has a lot of sinus infections and allergy problems. We are really crossing our fingers for a no hospital stay this season (or ever again). As long as she cooperates with her machines I think we could pull it off.
Please say an extra prayer that Sky kicks this cold quick and fast! Thanks
Saturday, October 19, 2002 at 03:09 PM (CDT)
Tomorrow we hold the 2nd annual Skylars Bowl for a Cure. Last year we had such a great time bowling for the Skylar Saranchuk Fund. The proceeds the the benefit goes to Skys medical fund and a proceed will go to SMA support.
Skylar has been doing dood. She has been spending more time with Daddy and loves every minute of it! I am holding my breath though. I have bronchitis and a sinus infection so am praying and hoping she doen't catch it. We are going for a NO hospital stay this season.
Skylar is definitley becoming her own person. I went to Atlantic City two weeks ago and she had her nurses with her all day. That is the first time I was away from Skylar ever! I knew he was in good hands with Debi and Pam though. Well then I got home from not seeing her for 16 HOURS!! I asked if she missed me and she rolled her eyes and said NOOOOO. Thanks Sky! :o)
She is truly an angel on earth and I am so lucky to be her Mommy.
Saturday, September 21, 2002 at 02:32 PM (CDT)
Boy am I terrible with keeping up with things! Well Skys dad had left about a month and a half ago. We had to find a new place to live and start to get our lives back in order. It hasn't been easy but with the support of family and some very special friends I am now starting to focus on my life again with Sky. Sky is adjusting to her new home fine. She has been doing very well.
I think there MIGHT be a possibility that her teeth are FINALLY deciding to push through. That will be a big party day for all of us.. ;o)
She seems to have a bit more movement in her left hand and could hold on to an object a bit longer than usual.
It is cold and flu season, the season I dread the most!! I am praying for a hospital free season this year!!! That would be GREAT!!
Thank you all for you support and prayers. You are the best!!
All our love,
Tracy and Sky
Tobey too (thats our dog) :o)
Monday, August 19, 2002 at 06:22 PM (CDT)
Well, it seems that my amazing little girl has fought off yet another illness without going to the hospital. She makes me so proud. Last year she was hospitalized every month for weeks at a time. She is still a bit sick but she is definitely over the hump. Thank you all for you love and support. You are all so great!!!
Thursday, August 15, 2002 at 01:25 PM (CDT)
Please keep Sky in your prayers. The past week she didn't want to come off bi pap. Not that she couldn't, but if you took her off she would want it back on within a half hour. Well, this morning she is just a mess! She is fine on pap (well her o2 is) but she has VERY labored breathing and is starting to get a temp. Her lungs are starting to sound tight and wheezy. So I am starting the nebs of albuteral, mucamyst and pulmicort.
She isn't sleeping. She slept from 1230am till 7 am last night and has been up since! It is 2:15 now! She is also pale. Gosh, I don't know... She hasn't had me this nervous in a while.
When I took her off pap this morning her o2 level dropped to 77% almost immediately. Yet on pap she is maintaining 97-99%.
Your prayers for a speedy recovery and appreciated! All our love!
Monday, August 12, 2002 at 05:00 PM (CDT)
The news station came up today to the taping for the MDA telethon. Sky was sleeping of coarse but it went well. They taped Sky with her bi pap napping. Then they just interviewed me. They were amazed how much info there was with SMA. The girl fell in love with Sky. How can't you? LOL Just as they were ready to leave Sky woke up. I was happy about that. They were shocked on how well she looked. Trust me after waking up.. Sky could look like a monster! It was nice. They are coming back later this week to do more footage on the day and life of a child with SMA. I am so proud of my girl!!!
Tuesday, July 30, 2002 at 02:57 PM (CDT)
We were informed yesterday that Skylar is going to be one of the main stories for the MDA telethon this year. She is even up for poster child! I sure she will air for our local telethon (not the national part of it). I am so proud of her! Especially now that she is spreading the word of her illness of weak muscles.
On another note~ I have been having a terrible cold for the past four days.. keeping fingers crossed that Sky isnt going to get it. So far, so good.
Wednesday, July 17, 2002 at 12:36 PM (CDT)
Sky had a really good night!
Before hand though.. she gets really worked up when I cough her. Last night, you could really hear stuff rumbling in her lungs so I cough away on her again. Afterwards her stats weren't all the best. She was holding 93% and her heart rate was about 165. After another set of coughing she started to relax and went back up to 99% heart rate of 125. During the night I heard the rumbling again, I just suctioned her and it went away, so it must have been in the back of her throat.
Today she is breathing a bit hard still but maintaing good o2 levels. Her heart rate is a bit elevated at times but no all the time.
SO I guess this is day #3......
Monday, July 15, 2002 at 04:31 PM (CDT)
I am not quite sure yet, but I think something is up with Skylar. For about a month not she has been having very loose BM's about 3 times a day. I added about 2 more ounces of baby food to her diet hoping this would work. It did a bit (now she only goes once a day) but I think she might be getting blocked up now. Her breathing is faster and her O2 saturations are not as hot as then usually are. Her temp. is up and down and she just seems uncomfortable. I had blood work done and the only think with that is that her potassium is a tad bit high (nothing major). We are waiting for the c-diff lab to come back.
I am hoping that it is teeth coming in. A lot of SMA children teeth late and of coarse I have one of the late bloomers! I was hoping for her 2nd birthday she would have at least one tooth. No such luck though! Oh well maybe for her third birthday??? Let's hope it is WAY before that!
Monday, July 01, 2002 at 10:04 PM (CDT)
Well, believe it or not, although Sky HATES water, she was in the pool the past two days and loving it! I don't know if it was the 90 degree weather or the fact that either Dave or I was holding her for comfort. I was so happy though. It gave her a chance to excersize her muscles. Also, I started putting her on her belly yesterday. This is the first time ever! I never chanced putting her on her belly due to the respitory issues, I was afraid to. She once again loved it.
This summer has been so hot and humid so far. Sky doesn't do good with humidity so we have been staying up daves Moms off and on pending just how hot it gets (our house is very hot inside).
Sky had two major colds so far this summer. She did really well with them though, thank God! Her sinuses are still a major issue and I am wondering about allergie now also. I guess only time will tell.
Love to you all and thank you for the constant support with Skylar.
Tracy ~i~
Sunday, June 23, 2002 at 10:05 PM (CDT)
Sky turned blue on me yesterday. Let me rephrase that, she turned gray! I am not quite sure what happened. I was down all night, thankfully Brenda woke me up a bit and I got over my pity party quick (well, kind of). I am thinking Sky has a relapse of the virus she just got over. She has been needing bi pap all day today and needs tons of coughing. She just got over her cold with flying colors, so I am hoping it doesn't come back to that.
As always you are all in our prayers!
Wednesday, June 19, 2002 at 12:39 PM (CDT)
Well, it's day 2 of this nasty cold Sky has. Last night I must have heard the monitor going off at least every hour, hour and a half. Debi (Skys favorite nurse) was with her. Thank God or I wouldn't have gotten any sleep! Her nasal secretions are mad crazy! Everytime I suction her out she has so much goop. Her oral secretions are like fountain water. Her O2 sats are holding from 95%-97%. I guess that's not too bad for a cold like this. Her heart rate has been up to like mid 140's to mid to high 150's. She usually runs about 115-130. The cold I had lasted about three days then the worse was over, so hopefully this is day 2 for Sky and after tomorrow the worse will be over.
Tuesday, June 18, 2002 at 10:54 AM (EST)
Oh boy, Skylar had a rough night. I was giving her a bath (some of you know how much she LOVES to bathe) and she decided to throw a fit. Well, I could see that she was really fitting and started to hold her breathe. I scooped her up (at this point she was white as a ghost) got her to her bed. As Dave got the in/ex I was suctioning away. I had a feeling she choked on a plug or something. I started to cough her while Dave hooked her back up to the pulse/ox. She was about 79-80 so I can't imagine what she was before that! I just kept on coughing her but she would not come back up! I blended in 1/4 liter of O2 and it brought her up to 94 within 30 seconds so I shut the O2 off. I gave her a few minutes to recuperate and coughed again. She stayed 95 almost all night. She is usually 98-100. This morning she is back to 98 BUT her secretions are SO thick! I am thinking she has got what I have. The last time her secretions were this thick she ended up intubated for 11 days. So I am freaking out a bit!
Sunday, June 09, 2002 at 09:45 AM (CDT)
Well, we had Skys birthday party yesterday and she had a blast. We hesitated on having it because she hasn't been feeling well the past few days but we did. Everyone was outside and she was inside most of the time. We brought her out for cake and presents and she loved it. I teared up again this year when everyone sang "Happy Birthday" to her. It is just the sweetest song in the world! Well, please say a prayer for Sky tonight. She's OK during the day but about half way through the night she just gets a mess. I don't know what's going on with her. Lungs are good, temp is OK (it went to 100 the other day thats it). She isn't acting sick. Her secretions are actually less than normal. She has had MAJOR bm's the past few days so I thought she might be getting dehydrated but I have been giving her pedialyte and extra water so that's not it. I've come down to a stomach bug. I just pray that is it. I hope her psuedomonas isn't coming back! Keeping my fingers crossed!
Monday, June 03, 2002 at 08:20 AM (CDT)
My little peanut..In 20 minutes(1:11pm) you are going to be 2 years old! HOORAY! Boy do I remember that day very clearly. Throughout the past two years, it has been a emotional roller coaster. There were times when I wanted to give up but then I would look into them beautiful eyes and know that I had to keep fighting right along with you. We did it baby! We made it to a day that at times I thought we would never see. I am so proud of you and I am so proud to be your Mommy. As for you my SMA family.. THANK YOU for the support that was so much needed in our hard time (as we all know there was many) For loving Skylar without ever meeting her, for loving (or hating LOL) me without ever meeting me. We love you all so much and we could never repay you enough for the generosity you have all given to us. Now for Dr Bach.. Hi Dr Bach! Well, Sky made it! Today is her 2nd birthday! According to all the doctors who diagnosed her, she wasn't going to make it 8 months. Then we met you and I remember you saying.. "she'll be fine. Times will be hard but it will get better the further they make it." You couldn't be more right. It did take a lot of crying, worrying, happy and sad times to get her here but every second was worth it. Thanks to you (and lets not forget Uncle Louie) and your protocol.. Sky is still with us today being the little bugger that she is. So thank you.. for being so caring about SMA kids and not giving up on them, for helping me out when I needed someone the most, and for being a friend. I don't care what anyone says about you ;o) LOL you're alright! We love you! We mean that from the bottom of our hearts.. Thanks
Tuesday, June 03, 2002 at 08:20 AM (CDT)
My little peanut..In 20 minutes(1:11pm) you are going to be 2 years old! HOORAY! Boy do I remember that day very clearly. Throughout the past two years, it has been a emotional roller coaster. There were times when I wanted to give up but then I would look into them beautiful eyes and know that I had to keep fighting right along with you. We did it baby! We made it to a day that at times I thought we would never see. I am so proud of you and I am so proud to be your Mommy. As for you my SMA family.. THANK YOU for the support that was so much needed in our hard time (as we all know there was many) For loving Skylar without ever meeting her, for loving (or hating LOL) me without ever meeting me. We love you all so much and we could never repay you enough for the generosity you have all given to us. Now for Dr Bach.. Hi Dr Bach! Well, Sky made it! Today is her 2nd birthday! According to all the doctors who diagnosed her, she wasn't going to make it 8 months. Then we met you and I remember you saying.. "she'll be fine. Times will be hard but it will get better the further they make it." You couldn't be more right. It did take a lot of crying, worrying, happy and sad times to get her here but every second was worth it. Thanks to you (and lets not forget Uncle Louie) and your protocol.. Sky is still with us today being the little bugger that she is. So thank you.. for being so caring about SMA kids and not giving up on them, for helping me out when I needed someone the most, and for being a friend. I don't care what anyone says about you ;o) LOL you're alright! We love you! We mean that from the bottom of our hearts.. Thanks
Saturday, June 01, 2002 at 10:16 AM (CDT)
I could hardly believe Sky is going to be two on Monday! I am so in shock because the time flew. Although it wasn't easy getting her here, it was worth evey second of it. The past few days her O2 has been a bit lower then normal. I come to think it is just the humidity (boy is it humid!). The house is cool today and she is 100%. I love it!! Well, next time I write I will have a BIG 2 year old in the house!! Love yo you all!
Tracy, Dave and Sky
Monday, May 27, 2002 at 02:18 PM (CDT)
The past two days Skylars saturations have been hanging at 96-97% on and off bi pap. Odd because on bi pap she is usually 99-100% and off she is about 98-100%. She has no fever, her lungs are clear but seems to be breathing a tad bit harder. I am keeping my fingers crossed that it nothing (sometimes I worry myself and it is just that NOTHING). She will be 2 in a week today. I am so thrilled! Thank you for keeping us in your payers.
Tuesday, May 21, 2002 at 08:28 AM (CDT)
Dr. Bach held a SMA conference this weekend and we were so happy to attend. It was so nice to finally put names with faces and meet everyone! Skylar and Kalair did some major movie buddying. Sky really like being with the other kids. Cassidy Swanson held Skys hand for about an hour and the two would just stare at each other. It was so cute. I could say something about all the kids but I don't think there is enough room on this page! Seeing the older kids really gave me a positive outlook on how Sky will be God willing in another 3 years or so. I really enjoyed the time I spent with everyone and I am so grateful to Dr. Bach for deciding to put this conference together.
Sunday, May 05, 2002 at 11:13 AM (CDT)
Well, it looks like we are heading out tomorrow for home sweet home. Sky is doing well and hopefully the gram negative that was in her blood stream is gone once and for all! Dr. Perez said this is the best he has ever heard her off her bi pap. She is getting to be a little more vocal than normal which is very nice to hear. She is smiling a lot lately also. I think she is feeling so much better and it will be so nice to finally be home.
Wednesday, May 01, 2002 at 06:14 PM (CDT)
Well since being back in Danville Sky has been doing fine. Her broviac was pulled on Monday and they did get an IV site for her meds (HOORAY). They wanted to put a PIC line in so we could go home and finish her IV meds but her veins are too small and had no luck. So we are stuck here till Monday. That's fine with me as long as she gets better and gets rid of this pseudomonas once and for all. Thank you all for your constant support and prayers for Skylars health!!
Friday, April 26, 2002 at 03:47 PM (CDT)
Sky was hospitalized again yesterday. After only a day off her IV meds.. she had a relapse of pseudomonas. Her temp didn't reach 105 this time, but it was still up there. Her heart rate was about 190's and she has very labored breathing. They will pull her broviac line on Monday. She is content for now watching her movies.
Thursday, April 18, 2002 at 11:31 AM (CDT)
We finally made it home yesterday and Sky couldn't be happier. The whole way home my Mom would ask Sky if she was happy to be going home and she'd say yeahhhhhhh. When we walked in the door she was all smiles. I was very eary about coming home knowing about the break-in but as soon as I reached my bed, I was care free. When leaving the hospital, Skys cultures were negative, so we must have caught the psuedomonas in the early stages. With the temp of 105, I'd hate to see what the late stages look like... Thanks you all again for being there for me. You all are great!!
Wednesday, April 17, 2002 at 06:14 PM (CDT)
We are finally home. Thank you God! Sky will be on IV meds for the next week. She was so happy to be home. So am I..:o) Doctor Perez said he was very surprised that Sky wasn't sicker from this bug. What a fighter!!
Thanks you all for your prayers.
Sunday, April 14, 2002 at 08:25 PM (CDT)
Well, I think we are finally over the hump. Sky had a great
day! I was able to cough her without o2 four times. I had her
off bi pap 3 times for a total of 1hour and 25 minutes. The only
reason she had to go back on was because she was breathing
too fast. Stayed 100% the whole time though. When I had her
off, I finally got a smile, the first in six days. She was loving
holding the balloons she got from Kim. She was back in her
routine of saying AHHHHHH when she gets suctioned. The
spelling of what Sky has is "pseudomonas". I know some of
you I talked to wanted to research it. I have never heard of
it....Did now.. and never want to deal with it again! Thank you
all for the prayers sent our way. We will still need them until we
break free from here. You are so wonderful and I don't know
what I'd do without such a GREAT support group. Thank you
all SO much. We love you all.. Sky sends a BIG smile and
says THANKS!!
Wednesday, April 10, 2002 at 07:40 PM (CDT)
Hello everyone.. I felt so bad for Sky. A 105 fever was
unbelievable and her poor little body was all hives. Her sats went
down to 65 and we (Debi her nurse and I) couldn't get her sats
up..We couldn't even get a catheter down her throat to suction her.
We had to call 911 and we were at the hospital at midnight. After a
very long night of all the basic blood tests ect. they let us go home.
Well, we made it to the parking lot and she desatted again. So back
into the ER we went again. UGG!! One thing I didn't understand and
if anyone could make sense of it (the doc didn't really give me a
good explaination) her white count was only 1,000. A norm is in
between 9,000-11,000. No clue! Today was along one also. Sky
was doing ok but she can't tolerate coming off pap AT ALL. She
dropped her sats to the 70's while trying to suction her nose. We had
to get her back on o2 for her to recooperate. She is now on room
air again at 97-100%. She is very dehydrated. I am guessing from
the fevers she has been running. At about 6 she had one of 104. She is sleeping alot. She is so dry that I
think it hurts when I in/ex her cuz she really puts up a fight and she
usually doesn't. Hopefully tomorrow we will get the cultures back
and see if anything else is going on. They seem to think it is all viral. I
will make sure you all know how things are coming along. Please say
an extra prayer for Sky tonight. She just isnt herself and it is killing
me. Sorry if there are tons of typo's but I am still up from 9am
yesterday morning and it is no 845pm. Saying that, I am going to try
to catch some zzz's. Love to you all and thanks for the prayers and
support.
Tuesday, April 09, 2002 at 10:36 AM (CDT)
A couple extra prayers for Skylar would be nice right about now. Out of the blue last night, she came down with a 103 temp (rectally). Debi (her nurse) rotated Tylenol and Motrin throughout the night which was able to keep the temp down a bit. It ranged from 99 to 102.2 afterwards. Her heart rate was elevated and she was breathing a bit faster. Her o2 saturation was only about 96-97. I called the docs this morning and she wanted me to bring her in (HELLO?? She knows I won't unless it is an emergancy) She wanted to check her ears and "take a listen to her" but Debi did both and she got thumbs up. So tomorrow I will call her pulmo. doctor (if she continues with her fever) and check her broviac again. If that is infected, it is coming out (I promise Stephanie and Mary). I was truly blessed with Skys health this winter (nothing like last, if anyone remembers) but it figures now that winters over, she isn't feeling well. I hope everyone is well now that the spring is finally here! Take care.. Sky would send hugs and kisses but doesn't want to infect anyone so she sends winks ;o) instead.
Friday, March 22, 2002 at 09:51 PM (CST)
I HAVE BEEN TRULY BLESSED THIS WINTER WITH SKYLARS HEALTH. A FEW LITTLE EPISODES AND SOME CASES OF A SINUS INFECTIONS BUT NOTHING LIKE LAST WINTER. THANK GOD. I AM JUST GETTING OVER AN EPISODE OF BRONCHITIS MYSELF (DAY 9) AND SKY DIDN'T GET IT. I DID PUT HER ON A PREVENTITIVE ANTIBIOTIC AND IT DID ITS JOB. I JUST PRAY HER HEALTH STAYS AS STABLE AS IT IS AND WE COULD GO INTO SPRING WITH FLYING COLORS!! LOVE TO ALL, TRACY, DAVE AND SKYLAR
Thursday, March 14, 2002 at 11:17 PM (CST)
Wow, I can't believe I didn't even update the journal since Skys last sinus infection. She did very well with it.. She makes her Mommy SO Proud! It lasted about 5 days. She has been pretty good (knock on wood) since. Thank God the winter is almost over. We are looking forward to the spring so Sky could get out bit more.....Thanks for the prayers everyone and lets pray for a cure for SMA soon!!
Saturday, March 02, 2002 at 11:27 AM (CST)
Well days three in Skys still not feeling well. Last night she wanted to be turned like every half hour, you could tell she just couldn't get comfortable. Her lungs are still clear "thank God" but her oral and nasal secretions are think. Especially her nose. Its dry (even with the humidifier) thats when I could tell part of her problem is her sinuses. She is still on bi pap for most of the day unless doing her therapies. I am still hoping she is going to get through this with a clean sweep! Keeping my fingers crossed..
Thursday, February 28, 2002 at 06:36 PM (CST)
Yesterday Sky came down with a cold/flu? Not quite sure what she has. I am thinking it is her sinuses again. Her lungs are good but the junk I am getting out of her mouthis yellow/green junk! I could tell it is all drainage from her nose. She maintains 100% on bi pap (thank God) but when she comes off, you could hear how heavy she is breathing. So for now she will stay on the pap. I started her on Zithromax to prevent any further progression of this sickness. Using the in/ex-suffulator is helping the movement for secretions from her nose.. Extra prayers would be great right now!
Dave is also sick again and I am now getting there with dizzy spells. So far, I think Sky feels the best of all three of us. As long as she could kick this I don't care how bad I feel... Hopefully we will all be over this bug very soon!!!
Thursday, February 28, 2002 at 06:36 PM (CST)
Yesterday Sky came down with a cold/flu? Not quite sure what she has. I am thinking it is her sinuses again. Her lungs are good but the junk I am getting out of her mouthis yellow/green junk! I could tell it is all drainage from her nose. She maintains 100% on bi pap (thank God) but when she comes off, you could hear how heavy she is breathing. So for now she will stay on the pap. I started her on Zithromax to revent any further progression of this sickness. Using the in/ex-suffulator is helping the movement for secretions om her nose.. Extra prayers would be great right now! Thanks
Tuesday February 12, 2002 6:35 PM CST
Sky has come down with a cold. She seems to be tolerating it well. She is 100% on and off bi pap. For most part I keep her on it though. I started nebs with her and have been coughing her as much as possible. Compared to yesterday her secretions have eased up a bit. Yesterday they were like paste, but today they are a bit thinner. With any luck, this will pass quickly!!
Sunday February 3, 2002 7:12 PM CST
Skylar is 20 months old today. I will never forget that day..Oct 3rd, 2000 when the doctors told Dave and I that we would be lucky if Skylar lived to be 8 months. Now 16 months later she is still with us. I am truly blessed to have her in my life. Yes, we had some very rough times but she made it and she is such a true inspiration to me. I pray they find a cure soon for SMA, so my beautiful girl could overcome this terrible disease.
Wednesday January 30, 2002 10:52 AM CST
Skylars cultures came back negative for growth! Hooray and THANK GOD!! Her broviac is cleared.. She is coming down with a sinus infection but we put her on antibiotics, just in case. She seems to have had 3 sinus infections so far this year, so we are going to have to keep our eye on her in this field.....
Thursday January 24, 2002 11:38 AM CST
So far, Skys blood work is coming back good. Her white count is great. So I am hoping that the culture is negative. I am thinking we should know today or tomorrow. Everything was pretty good besides her potassium was a bit low. I will add extra to her formula.... Other than that, not much new.
Tuesday January 22, 2002 10:22 AM CST
Sky went to the docs yesterday to get her labs drawn again. We should have the results in about three days. Dr. Perez was happy with Sky respitory wise. It is the first time Sky let him examine her without her bi pap on. She usually throws a fit. Then Dr Ryan came in (infectious disease) and thought the site looked great and believes the infection responded to the meds. Let's hope!! She aso got her RSV shot. Poor baby was sleeping when they jabbed her. She is 31 inches and weighs 14.9 pounds....
Tuesday January 22, 2002 10:22 AM CST
Sky went to the docs yesterday to get her labs drawn again. We should have the results in about three days. Dr. Perez was happy with Sky respitory wise. It is the first time Sky let him examine her without her bi pap on. She usually throws a fit. Then Dr Ryan came in (infectious disease) and thought the site looked great and believes the infection responded to the meds. Let's hope!! She aso got her RSV shot. Poor baby was sleeping when they jabbed her. She is 31 inches and weighs 14.9 pounds....
Jan 15, 2002 4:15 PM
Skylar has been pretty good lately. Knock on wood. She has been coming off her bi pap a lot more than normal and does great! We go back to Danville on Thursday to see if her infection has totally cleared up. I am praying it has so we don't have to have it removed...
Friday, January 11, 2002 at 01:43 PM (CST)
Sky started to have the epsidose again of high heart rate and low saturation yesterday. I was an inch away of taking her to the hospital when I decided to take off her bi pap and in/ ex her first. The moment I took off her bi pap her heart rate calmed down and her o2 came up to 100%. I guess she was sick of wearing it. She stayed off it for over an hour last night.. that is the longest in awhile. We need to get her sleeping issue resolved! She didn't fall asleep till 6:15 am this morning!!
Tuesday, January 08, 2002 at 12:26 AM (CST)
SKY HAD A GOOD DAY. NO DESATURATIONS. I THOUGHT SHE WAS GOING TO HAVE AN EPISODE SO I IN/EX'D HER B4 HAND AND SHE WAS FINE. DR PEREZ DOESN'T THINK SHE SHOULD HAVE THE LINED PULLED. HE ALSO DON'T THINK SHE HAS SEPSIS. HOPEFULLY, SHE WILL CONTINUE TO HAVE GOOD DAYS, BUT IF NOT I AM GOING TO MOST LIKELY HAVE THE LINE PULLED...
Sunday, January 06, 2002 at 10:19 PM (CST)
Well, since we got home on Friday, Sky has been having these episodes of desaturations (84%-92%) and high heart rate (190-195bpm). I am able to get her back up with the in/ex and bi pap. Sometimes she is so worked up though that it takes her a bit to calm down. Dr Perez thinks it is just her not feeling well.. Dr Bach thinks she needs to be admitted for she might have sepsis. I will call in the morning and see what Dr Perez is going to do. If nothing I might have to take her to UMDNJ. Neither docs think it is from the vancomycin.....
Saturday, January 05, 2002 at 12:18 PM (CST)
Well, we got home yesterday. Sky is on IV meds at home. She seems to be dealing with it good.. She had a bit of a rough morning today. Her o2 dropped to about 90 and her heart rate was 190. I in/ex'd her and afterwards she is back to normal. The pre-med of Benadryl seems to be doing well with her now. She isn't getting as sleepy as she was in the beginning. She is going to be on the meds for 2 weeks. The doc says there is a 50/50% chance it will work. If not, out comes the line... Keeping my fingers crossed...
Thursday, January 03, 2002 at 12:44 PM (CST)
Sky was admitted last night. They started the meds. Benadryl and Tylenol were given before the vancamycin (since she allergic to it.) She took to it well! She usually gets "red mans syndrome" (her whole body turns red) but she did good! We are hoping to be home tomorrow...
Wednesday, January 02, 2002 at 02:30 PM (CST)
Sky is getting admitted in Danville today for her broviac infection. The only meds that will take care of it.. she is allergic to. They have to pre med her 1st. I hope this will work.. Last time she did good with the pre-med of benadryl so she didn't get the red mans syndrome..
Tuesday, January 01, 2002 at 07:18 PM (CST)
Sky has been running a temp. the past three days. It has only been 99 but today it is 100. She has been very miserable the past two days. She is only off bi pap for short periods of time, which to me shows that she is sick. We are still waiting for the IV meds. to come. If I don't hear by Dr. Perez tomorrow, I will have to call him. We can't let this infection get any worse than it already is.
Friday, December 28, 2001 at 06:01 PM (CST)
We found out today that Skys broviac line is infected. We are going to try to do IV meds at home starting Monday. Until then we will stay with Cefzil. Dr Perez wants to give it two weeks then do another culture. If the meds didn't work then we will have to have the line pulled. After that we will decide if we will have another one put in or let it out. There is pro's and con's to both. It is dangerous to put it in, as is a lot of things are with SMA kids. The postive part of it is that she won't have to be stuck for blood all the time. Incase of an emergancy there is an IV site available.. It is also very hard to get a site started with her. Hopefully the meds will work and we won't have to make that decision...
Wednesday, December 26, 2001 at 02:59 PM (CST)
Skylar had a very good Christmas. She got so much stuff I don't even know what to do with it all. My mom and brothers came over in the morning then we went up Daves parents in the afternoon.. On another note.. Skys cultures are still coming back positive. She doesn't seem very sick atleast till today. She has a bit extra secretions... very whiny.. and still sleeping a lot! I have to call Dr. Perez tomorrow to see what they plan to do. It is possible it is her broviac line but they say the only way to find out is to pull the line. If they do that, I am not sure I will let them put it back in. Last time it turned out to be a mess....
Monday, December 24, 2001 at 10:45 AM (CST)
Just keeping notes so I don't forget. started to try pear juice with Skylars diet. She seems to be tolerating it well. Santa came to visit Sky last night. She didn't cry at him. We got her pictures. I was so excited! I don't take her out to stores, so I figured the least I could do was bring Santa to her. She loves to open presents.. Her eyes get so bright!! Healthwise, she is doing well (knocking on wood).. Merry Christams to everyone!!!
Wednesday, December 19, 2001 at 06:25 PM (CST)
This whole bacteria infection thing is driving me crazy! The blood work came back positive for more bacteria growth but now they think it was contaminated. Knowing she has no fever, heart rate is good... they think it is a mistake from the lab(I think). Skys sat's dropped to the 50's twice last night but her nurse Debi (her favorite ---> sh!! ) got her back up to normal range. Thank God for her! She's been doing good today. Just seems to be sleeping more then usual. She is getting so big! She is now 30 inches and 13 3/4 pounds. She is such a trooper.. she makes me proud!!!
Monday, December 17, 2001 at 05:04 PM (CST)
Just found out Sky had a bacteria growth when we left the hospital. It was two different bacterias. Hopefully the meds she is on now (cefzil) will clear it up. The home nurse is coming tomorrow to draw blood to check on it..
Sunday, December 16, 2001 at 01:27 PM (CST)
This page has just been created. Skylar was in the hospital this week with a bacterial virus and a possible bronchitis. She is currentley home still recooperating.
Click here to go back to the main page.
----End of History----