History

Tuesday, October 18, 2005 9:26 AM CDT

Callie had her first (and hopefully only) hospital stay for the"season" in the middle of September. she was not so wiped out sick and had way too much fun playing PICU boss. she was in the PICU for most of her stay since she needed more respiratory support(bi-pap) than what we do at home. She's been home for about 4 weeks now and is doing well.
I am glad to be waiting til next year to send her to school. Gives us a year to try to stay healthy and adjust to the recent swallowing issues she is apparently having. She still loves to eat with her mouth - even with strategic bolus feeds (right before family mealtimes) - so that has been a bit tricky. HMMM... basically she is her usual cheerful, witty, 4 yr old self. (OK- most days she can get quite bossy- but generally she is fun and charming.)
We have a couple really fun things in the works. I sent her name in to Make a Wish Foundation a few weeks back. The volunteers came last Saturday to meet us and find out what Callie's wish is. At first she would hardly even look ata them even though they brought her some goodies. Eventually, sister Megan helped Callie to loosen-up and talk about her favorite things. We are hoping they can send Callie (and us too) to Disney World next spring. We should hear if the trip is approved around the end of November. As you might imagine we are all excited. Then, just last evening we got a call from somone connected with Johns Hopkins Children's Center about another special event. Daddy talked with them so I am not sure of the details. It involves goiong to a nearby airport- boarding a jet and taxiing around to another location at the airport tht is set up to be the North Pole for a party with Santa. Sounds pretty interesting, and it was neat that the play lady - who Callie looked forward to spending time with each day while she was sick, would think of Callie to have such a neat experience.
I am doing pretty good - doing what I can handle (mentally, physically, and emotionally). I am just about through the anatomy section of my Medical Transcription course - it has been slow going but I'm getting there. If I can just concentrate when I have nursing help so that I can get through the rest of it and get a job!!! In the mean time I am picking up some hours here and there where I used to work FT, working as nursery staff on Sunday AM and Wednesday EVE at our church and delivering about 400 weekly papers. The papers is more for exercise than $$$- but it beats paying for a gym membership that I would not use.
I go this week for an IEP meeting - I am going to see what they have to say since Callie is not going to school this year- I hope to make arrangements for her to have regular OT/PT sessions- at least a couple times a week and get someone to help me with the Assistive Technology piece. She loves to mess around with the computer - but gets a little frustrated b/c we don't have a good set-up for her. This is a kid who loves to help in the kitchen any way she can- especially opening and closing the fridge with the front wheels of her chair - a smart cookie - we just have to get her set up for success.

That is about where we are, thanks for checking in.

Tuesday, July 5, 2005 5:49 AM CDT

Boy, oh, boy does time fly when everything is good and we are having fun! I am having trouble remembering all the fun things we've done since the last update. I'll just dive right in with the biggest and most recent doings.....
We drove to Philadelphia, PA on June 22 for a vacation of sorts. The annual Families of SMA, family and professional conference was June 23-25 so that was the main part of the vacation - more of a learning experience - but still lots of fun.
The highlight of the conference is best described, "zoom! zoom! ZOOM!!!!" You should have seen all those kids virtually flying around the spacious areas of the hotel. They played chase, tag, hide and seek, and at one point there was a wheelchair train. It is a good thing we got Callie's speed capabilities increased before we went, or she'd have been left in the dust! She now makes her mom a nervous wreck as she barrels through the yard shrieking with glee. She is sometimes given access to the buttons that turn the chair on and off and change the speed - mostly so she can turn her chair back on when it goes to "sleep" from being still too long.
We arrived a day early so we would have a chance to see the Liberty Bell and Independence Hall. A family we know from Wyoming was on a similar time schedule for the historic tour so we spent Thursday afternoon with them. It was fun to watch Callie and Aschdon figure out how to stay "in-step" with each other so they could hold hands or talk. Callie's mom got to dance with Aschdon and the big sisters got to play on historic cellar doors while we waited our turn to see where the Declaration of Independence was signed. It was a little creepy, but we got to see where Ben Franklin is buried too. Every now and then Callie would ask, "when are we going to see the Jingle Bell?" or " when are we going back to Philly?". I guess she thought since we got in the van a drove through town that we had left Philly and gone to a different town - pretty cute. Oh yeah, if you ask here where we went she will say, "Philadelphila, or Philly or conference."
The conference was a blast! Just being around so many other people who pretty much know what our day-to-day lives are REALLY like, helped us all relax a bit, I think. We all met some new friends. This was our 2nd conference so we knew more what to expect and were able to share some of our experiences with newcomers. The kids had a huge playroom with lots of crafty activities to keep them busy while the parents went off to learn more about how to take good care of them. Callie and Megan were both happy to go play with their friends and would ask how soon we'd be taking them back after lunch each day. We got in the pool once, which was not as often as we'd hoped- but there were plenty of other activities that filled the time. Friday night there was a carnival with lots of games with prizes, a cotton candy stand and a disco room with all sorts of lights, streamers,music, bubbles, fog and bubble wrap. ( The bubble wrap is fun for the kids to run over with their wheelchairs - but it is only fair to warn the grown-ups that is what is going on since it sounds like gunshots with so many pops at once.) There was a "Children's Auction" where we bought tickets to try to win some prizes - we put a bunch of tickets in the Barbie "pot" but none of them got picked. Callie was a little bummed about it but it all worked out OK. Saturday night there was a huge banquet and silent auction. Megan had a good time keeping an eye on her two favorite items, and won a cool "moon" chair. Steve got in a bidding war for an FSMA rolling suitcase and ended up contributing a decent amount of $$ to the cause. Marcia won shirts for the grandma's and a big box of Jelly Belly gourmet jellybeans to share - yummy! Callie and Megan each got a Philly T-shirt at the hotel gift shop and our trip was complete.
Early in June we made a trip to the McHenry Highland Games near Deep Creek Lake in Garrett county. Callie loved the bag pipes and the dancers! She and Megan got their faces painted ( and Callie got faces painted on her knee caps which was cute). They each did a sand art bottle craft, we ate forfar bridies for lunch and took a picture of Callie's face in a wooden cut out of a dancer. there was a good storyteller there too and Callie and Marcia helped a little with the interactive parts of a story about "Jack" who was a pretty silly boy.
Our Independence Day celebration was on Saturday the 2nd. We watched the town parade, which started in our development this year. Callie was disappointed that there were not any horses in it. We'll see some at the Delta,PA parade in a couple of weeks though. We had a "just-us" cookout with steak for the grown ups and hotdogs( with the burned parts cut off) and plenty of ketchup for the girls. A big hit this summer is pink lemonade - it is almost a tragedy if we run out! We had red and blue Jell-O (that Callie helped to make). with whipped cream for our patriotic desert. Callie watched a sign language video that featured patriotic songs to get ready for the festivities. Megan and Steve set off some small fireworks in our driveway while we waited for the town display. Ga-ga and Pap-pap came by just in time for the big fireworks. Callie thought is was funny that they sounded like "dunder" and loved it when she got to see the purple ones. On the actual 4th we kept things low key. Callie and Megan designed and printed paper dolls off the computer and then glued the outfits on. It was cool to see & hear the sisters getting along so well. Callie got to air write her name with a couple of sparklers with Mom's help of course)when we finished off the Wal-mart fireworks after dark. We enjoyed the music and fireworks of "A Capital 4th" thanks to MPT. We missed having Doug home but it was a pretty good family weekend- it will also be good to get back to a "normal" routine.
Thanks for stopping by to see how busy Callie is keeping us!!!!

Monday, July 4, 2005 10:53 PM CDT

Hope you enjoy the new pics from our trip to Philly. I goofed and deleted the story that went with them. I will re-write it very soon just not tonight. Thanks for checking on Callie!!!

Monday, July 4, 2005 10:17 PM CDT

Tuesday, May 10, 2005 8:01 AM CDT

Callie got to come home Sunday afternoon. It always seems that she comes home even stronger than before she got sick. She wanted to dive right into all the Mother's day fun-(a cook out at Grandma's) and playing outside- but we decided that was not the best thing to do right out of the hospital. anyway it is cool for us all to be back home.
Hope you all had a memorable Mother's Day! {{{{{{{{{HUGS}}}}}}}}} and @}----- @}----- @---- To all you splendiferous Moms!

Saturday, May 7, 2005 2:01 PM CDT

Callie has been such a good patient. She has worked very hard at getting better and has had 2 very good days. She will be sprung from PICU by Monday for sure and might even come home by then. I'll update more after we get her home. She is much more hersef and providing entertainment for anyone who comes by her bed.

Tuesday, May 3, 2005 8:06 PM CDT

We just could not keep up with Callie's allergy secretions and she developed a pneumonia - at least it looked like there was something going on in her right middle lobe on Thurs afternoon(ambulance trip to FMH) and Friday late night x-rays(back to FMH by car- then on to JHH PICU around 0600 Sat). But by Sunday that seemed to clearup and the left lower lobe was partially collapsed and it looked like there was a pneumonia in the upper left lobe. So she is in the picu and has been on constant bipap at 16/6 with 3L O2 bled in doing vest Q2 hrs and coughing q8 (that could be more- but I am nervous about pushing it b/c of the collapse),zosyn IV and Azithromycin via g-tube for bug coverage( I'm not convinced either is necessary- but don't mind erring to caution). Xopenex q4hrs and her usual home meds.
They did not give me a tough time about feeding her this time- thank God - so she is getting Pediasure with fiber at 50 cc/hr continuous. We tried it at 65cc/hr but were getting some when we suctioned- so figured her tummy was too full and she was coughing some of it up while trying to deal with the suctioning process - seems better since we backed down.
She was off bi-pap for a little bit today and doing OK with only 1L of O2 - so they might let her eat a little if she wants and hopefully tomorrow she can get moved out of PICU.

Friday, April 29, 2005 9:59 AM CDT

Callie had a very weird day yesterday, We restarted her oral steroids at a higher dose and for longer. she was very sleepy and "junky" and when she woke from her early (11:30- 1:30 ish) nap she was grunt breathing and was not much better after a breathing treatment. she still wanted to play on the computer - so we got that started- she fell asleep on her tray. So, being pretty worn out myself I decided to call an ambulance to get her where she needed to go.
We went to Frederick Memorial ED. She was already improving enroute with some oxygen and another neb. A chest x-ray showed the hint of a shadow in her right lung (possibly the beginning of a pneumonia), so after talking to our Hopkins connection we were sent home with an Rx for and antibiotic and told to be even more aggressive about breathing treatments with all sorts of chest physiotherapy and cough machine to keep the "junk" moving. And extra bipap- at least when she is napping as well as her regular night time. I am trying to get her to wear it some while she is playing- yeah right! So, she is still teetering a bit but we are working through it and doing al that we can to take care of her here at home. I am glad that I am now off for a whole week - even though it is going to be an exhausting time off I think.

Wednesday, April 20, 2005 9:11 AM CDT

Events over the past week and a half have been interesting.
It all started Monday 4-11-05 when Callie got x-rayed and wrapped for her new back brace(TLSO)!!!! Here is THAT story:
Once we got on the road to Baltimore- thinking that orders for x-rays and brace would be waiting on a desk for us - that is what it sounded like Friday - there was no turning back. There was an order for the brace- but a little confusion about the x-ray order. So the Dr who happened to be in clinic today asked us to come on over. We talked about what needed to happen- he wrote for the x-ray and we walked down the hall and got to visit with a local SMA Mom and kid while we waited for Callie's "sitting". About 2 hours after initially pulling into the garage we were on our way to the orthotics place to be cast. Being the nut that I am - I HAD to get a few pics of Callie in the cute "dress" she gets to wear so she does not get plaster all over her skin.She was a real trooper through the whole day. I think she enjoyed the attention.
I felt like I barged in and said this is what I want and I need it now- but was not actually made to feel like that- everyone we dealt with was very kind and helpful. It was a very long but successful day and in a week or so we will have a new brace to help keep Callie tall in the saddle and ready to GO, GO, GO!!
PART 2: The time between then and now.
Callie is scheduled to get her new brace and hit two other stops for appointments in about 2 weeks. Unfortunately, we all had to missed the MDA Stride & Ride due to a scheduling snafu for Callie's Mom. The Callie's Cruisers team still managed to raise about $1,000 for MDA.Hopefully we will be more successful next year and get to spend some fun time with our MDA friends at another Baltimore area Mall.
Callie's voice has been sounding a bit nasally for several days. Monday the reason became apparent. The dear girl is suffering from seasonal allergies like never before. We are all thankful for Claritin REdi-tabs which dissolve super fast and keep the allergy symptoms more under control. She has been a trooper through extra respiratory treatments and tons of coughing and extra effort breathing. She has been super about wearing her bipap/breathing machine for a few extra hours each day and getting some extra sleep. She is missing her school friends since her Mommy won't let her go to school when she has weird breathing and nasty coughs. We have closed up the house and started our air conditioning hoping that will help dry things out.Callie is in good spirits and is a bossy as any other princess girl her age.
Sorry this is so long - but now you know what we are up to.

Friday, April 8, 2005 2:54 PM CDT

Callie had a blast celebrating her 4th Birthday at Pizza Hut with some of her cousins and a couple friends from our old church-and of course, a bunch of grown-ups. She was showered with many fun gifts of ponies, Polly Pockets, new clothes, a Barbie fashion computer game and a Disney Princess Ballerina game that we are adding all sorts of magnetic "dancers" too.
She helped me plant carrots and Strawberries in our new little patch we are trying to garden in. We plan to add a couple tomato plants and maybe a hill of cucumbers. She loves to be outside.
Callie is back at school and loving it. She stayed home today to have her power wheelchair adjusted since she has grown so much in the past 5 months. She snacked all morning after the equipment guy left and then slept pretty hard for about two hours. I guess her first week back has tired her out.
I am driving the nursing agency crazy by constantly adjusting when we need nurses. I think it will be good to have a nurse with Callie at school as much as possible. So, with our 20 hours I figure we can go for 4 days a week from 8 am to 1 pm. The kids go down for a nap at 1 and get up at 2:30 and are picked up by 3. The agency has had trouble getting nurses to fill our current schedule - maybe this will help. Wednesday they sent us a guy nurse - of course they asked if it was OK first. He was super with her and she did not take long to get over being shy with him. It was nice not having any worries about him being strong enough to handle her. I sometimes even wonder how long I will be able to carry her - I am sure I will be fine for quite a while- but it does cross my mind. We met another potential guy nurse Thursday afternoon. I don't think Callie will take too long to come out of her shell with him either. He shared a little of his home nursing philosophy which I thought was kind of interesting and pretty much on the mark. He said he feels like he should be like furniture - there when the patient needs him but not in their face all the time - not a direct quote but my interpretation. I don't think it can be like that in each nurse/patient relationship though.
We are trying to get things coordinated (still) for Callie to get a new TLSO/back brace. I think we will have a good handle on this by Monday as we are scheduled to pick up orders at the pediatric neurology office and go for x-rays followed by casting at the orthotics office.
Now that her powerchair is fixed and adjusted, Callie is all set to go to White Marsh for this year's MDA Stride & Ride walk-a-thon fundraiser. Last year she was too shy to drive her chair in public so her Daddy got to push her all around the Town Mall in Westminster. This year, I think the Callie's Cruisers team be chasing her instead. She will probably be singing the whole way, a medley of her 20 or 30 most favorite songs with a few made up verses in between.
I think that hits most of the highlights of the past few weeks. I am going to try to update a bit more often - so Callie's friends, family and fans can get a better picture of what my busy girl is up to.

Wednesday, March 16, 2005 8:31 PM CST

Man oh man- I am baaaaaaad about updating this site.
Callie came home from the hospital on February 27, just shy of my limit of 2 weeks. the first week was a bit nerve wracking for me since she still has more secretions than normal and was still breathing a little strangely. She is doing much better now.
Just when I was getting discouraged about our nursing situation it seems to have turned around. The week that Callie came home, her Thursday & Friday nurse had a family emergency of sorts and was unable to come. One of the nurses the agency had lined up had a death in her family and had to go out of town for a couple weeks. Last week Callie did wonderfully with a nurse that she met briefly about 2 months ago. Her regular nurse was back on Thursday and Friday - I think Callie would have been singing "Reunited" by Peaches & Cream if she knew it- they had a grerat time. After talking with the agency about the difficulty of finding 8 hour coverage for Tuesdays - I decided that I could benefit nearly as much from having the coverage on Wednesdays. Today we met a very experienced nurse who will most likely become Callie's Wednesday nurse.
I may have to see if she can do an occasional Monday instead of Wednesday - but it seems we are covered for our alotted 20 hours a week. Hopefully, I will be able to sleep better after a long nights work or accomplish, with less interruption, the ongoing tasks on the to do list, or believe it or night take an hour or two out to take care of myself. But this is Callie's page so.....
Can you believe it that little sweetie will be 4 years old on Monday (3/21). HAPPY BIRTHDAY my sweet girlie!!!!!
Blessings to all our friends~~~~
Marcia

Tuesday, February 15, 2005 6:16 PM CST

My apologies for not updating more frequently. It seems we were sailing along quite nicely for the past 2.5 months; becoming very accustomed to having help from 2 wonderful nurses and looking forward to spring and going back to school part-time. Callie was supposed to have her feeding tube changed to a "MIC-key" button- that we can attach and extension tube to "plug in" just when we need to use it. That will help make her safer from getting the tube snagged and/or pulled out accidentally. Instead, Callie was admitted to Johns Hopkins yesterday for trouble breathing. We thought it might be aspiration pneumonia since she woke up by vomiting yesterday AM but the x-rays don't show anything.
Callie seems to be holding her own on constant bi-pap at 16/6 rate of 4 and 2L of O2 bled in. She is sating at 96 + (even when off bi-pap on room air for about half an hour this AM)- but she was working kind of hard at breathing. Suctioned a bunch of very thick off white junk.
The puzzle is that her bicarb is dropping even tough her co2 is fine. and her blood sugar is low. I told them I think the low blood sugar is because they have given her nothing but D5-1/2 NS w/ 20 meq of potassiom. I was told a "normal" person should be able to maintain normal blood sugar with that. I finally convinced one of the docs that she needed to be fed ASAP and her neurologist stopped in to see her and backed me up. So, they will start feeding her past her stomach so she won't have an aspiration risk.
One day at a time and lots of patience and prayers. Thanks for thinking of her (and us).
Marcia

Monday, January 3, 2005 3:07 AM CST

Happy New Year! I hope you have enjoyed the holidays and everyone is doing OK.
I am finally getting around to the Callie update for you. She is doing pretty good - it has been a month since she came home from the hospital. She has gained about 5 pounds since getting the feeding tube two month ago. She had some sort of stomach bug last week- but weathered that OK. She has a trouble spot to one side of where her feeding tube goes in that is sore and red looking ( prayers for it to heal and not get infected). We are slowly getting used to having a nurse in our house each morning Mon-Fri. to help with morning respiratory treatments and feeding tube care. The feeding tube is to supplement her regular diet by giving her Pediasure through it at night.
Respiratory wise she has done quite well and is getting used to using her new machine that helps her to cough harder. We need some prayers that we can work out a good schedule and willingness to get her to use her back and foot braces and standing frame.
Callie enjoyed Christmas and had a blast opening presents from all her loved ones( we don't celebrate Santa - but are learning a bit about ST. Nicholas). It was fun for Callie to sing Happy Birthday to Jesus- over and over! Her Daddy made a lemon cake to celebrate and put a candle on for each family member (their favorite color) and one white one for Jesus and we all blew them out. Her favorite gifts seem to be the multitude of Polly Pockets magnet dolls, "mini-generic Bratz" dolls, Donutman DVD and a singing & bouncing snowman. Callie also enjoyed having some time with her big brother, Doug, home from his Navy corpsman training in Great Lakes, IL.
Her power wheelchair stopped in the middle of her Christmas shopping trip. So Mommy disengaged to motors and pushed her all over WalMart. The next day the repair tech came and took the chair to the wheelchair repair shop- where it is waiting for a part. We miss that chair and hope it comes home very soon.
That's the new from Callie's mews!
Happy New Year Every one!

Sunday, December 5, 2004 6:23 PM CST

Hi everyone. I don't think it has quite been two weeks- but here is a comprehensive update....

Callie has now barely been home a week since her 3rd hospital stay since the end of September- add it all together for 5 weeks of hospital time. I know that is a drop in the proverbial bucket for some of you- but it is way too much anyway. So here is what is going on at this point: She seems to be on the mend and quiet feisty bossing us all around and telling us the way things are.

She had a PEG placed on 10/29 - our scheduled weekend stay that turned into a full week- it is healing up pretty nicely and we are feeling more comfortable (and grateful after our last go round) with the ins and outs of that. (sorry about the pun- just seemed right) She gets Pediasure( Not necessarily the feeding of choice - but we will work on that) at 60 ml an hour for 12 hours. This is about the same as 3 cans or about 700 calories- which from what I can tell is half the recommended calories for an average healthy 3 yr old. She continues to eat like a typical (OK more lately since she finished a course of Orapred on 12/4) 3 yr old- only very slowly. I am thinking that this is too much even though she does have a bunch of catching up to do. Any thoughts or tips? I am thinking about maybe something at least better than Pediasure- I've heard that Peptamen is pretty good.

We had given up bipap about last March or so because she would get all freaked out and usually vomit after our 5-10 min struggle to get it on. So She spent a bunch of time on it during this seasons first admission (late September+) and has been really good about it ever since. Except this Nov. admission they increased her setting from 14/4 to 16/6- " to help fully open the left lower lobe and keep it that way". (She usually only wears the pap at night- and now during some naps) she seems to have trouble readjusting her breathing once we take the pap off in the morning. ( I think her poor little abdomen is so crowded with the feeds and the higher pap settings-am I nuts or does this make sense?) I talked to the docs in the hospital about it every time they came around - and more or less got the blow off. GRR.- I usually do OK with docs- but the more I've learned about what works for her it seems they don't want to listen to what I am saying.

She has been switched from Flovent inhaler to Pulmicort nebs- which I think is a good thing- just wonder if there is anything unusual I should keep my eye on- I know not to let it blow all over her face and have her "rinse" after each treatment to avoid the yeast issues.
She has also been started on 1.3 mg of reglan given once a day before her feeding starts- because she was vomiting about an hour or two after feed/bipap started each night in hospital. This has seemed to help- as in she doesn't vomit any more.
We are now getting 4 hours of nursing a day 5 days a week.- It just started this week with a Tue/Thur nurse.- she basically told me that I could show her what need to be done with Callie and go do what I needed to do - like even leave the house for an hour or two. I am glad to have a confident nurse- but we are talking about MY kid- who is only 3 and a half and used to having family to take care of her. The case manager who wrote up the LMN made our situation sound a bit more involved than it is- which I don't exactly appreciate- because then the nurses show up and it is not so involved so it feel like a lie. Guess she had to do what she had to do to get it approved- I am realizing that I do need regular skilled help- but I am having a hard time backing off to let them do it. And I MIGHT be able to leave the house for an hour in a week or two- but I'm not going more than 5 miles away for quite a while. ( I am so much more of a concerned control freak than I like to admit.)
Callie is doing quite well in her powerchair- and gets a bit ornery about running into stuff- 3 strikes and the chair goes off for 5-10 minutes. One neat thing is she has learned to open and close the fridge with it- by herself. She can't really reach anything to get stuff out- but...
She has not been in her stander for about 3-4 months- so we are going to have to work on building that back up I guess. Which brings me to my next concern- when the nurse was doing some gentle stretches with Callies ankles on Tuesday- Callie started crying inconsolably- we noticed that the ankle looked swollen but nothing else was odd. ( Of course in my heart I wanted to go get it x-rayed right away- but held back to see what might happen the next day). Well, over the last few days- both feet and ankles have been a little swollen and tender to the touch. Her calves have also been hard. This has been on and off- not constant and I have not been able to connect it with any particular activity or anything- except that since she's been home she has been spending a lot of time in her power chair and her "therapeutic- table chair" with her feet sort of dangling ( she likes to be able to swing them) and I had the Rph I work with look up side effects of Orapred- which include some arthritic- like joint pain- this puzzles me though since she has never seemed to have this past times she was on steroids and it is only in her legs. We will get it checked out at het post hospital followup visit on Tuesday.
Hope all are staying well and enjoying preparations for winter holiday celebrations. At our house we are shifting form the Santa scene to Jesus Birthday and showing our love for each other iwth thoughtful/useful gifts. I am working hard to preserve some of the "magic" of Santa but be honest about the Real reason for Christmas.
Time to finishe building and decorating the tree.
Peace to all-
Marcia

Saturday, November 27, 2004 12:42 AM CST

Hello Friends-
It seems that the ususal interval for updating will be about 2 weeks- especially during this busy time of year.
Likewise, it seems the longest Callie can stay out of the hospital this fall is about 2 weeks. She caught a cold with all the nasty mucous that makes it so tough for her to have any chance to keep both lungs fully functional. So, on the 16th she was admitted to Hopkins PICU again and spent 48 hours on her bi-pap(breathing machine) to help open up her lungs. She was moved out of PICU last Sunday- but the "junk" seems to be hanging on for longer than usual and her lungs- especially the left one is being stubborn about fully inflating.
She has been in pretty good spirits throughout and a real brave little girl when it comes to the tough business of IVs, blood draws and most frequently deep suctioning through her nose and down into her airway to clear out all the mucous. We are tankful for the PEG tube so that she can get most of her medicine through that and she can get nutrition directly to her stomach. This helps us to make sure that she has the strength to do the hard work of getting better.
This has been a pretty tough fall for many of our SMA friends and we continue to pray for strength and wellness for all of them and their caretakers.
Hope Thanksgiving was filled with good food and many relational blessings.
Thanks for checking in on Callie and sending up some prayers for her recovery.
Blessings-
Marcia

Saturday, November 13, 2004 12:17 AM CST

Hi there friends,
this update is- as usual WAY overdue. Callie's peg placement went well in and of itself(2 weeks ago). We are adjustng to this new way of adding to Callie's diet so that she can gain some weight.
Her hospital stay was 4 days longer than anticipated after her left lung collapsed again (2 days after surgery) and she required a day and a half of solid bi-pap support and frequent suctioning to reopen the lung and get the extra secretions out. We would have been quite happy without this PICU detour- but really expected somthing like this to happen.
Now we hook up her pediasure at about 7 pm and turn her off around 9 am or so. She is ordered to get 60 ml/hour for 12 hours- but we are trying to keep things moving by adding some water so it runs longer. Most days she had been eating more than usual- one night she ate 3 pieces of pizza (minus crusts of course). I figure that the night feedings have expanded her stomach capacity and thus her appetite.
She was weighed on Thursday and had gained a whole pound since Monday.

I had to make a tough decision to pull her out of her Head Start Class. I know she enjoys it and overall it is good for her- but with her fragile lung health I decided she would be better off avoiding the daily germ pool until she has some time to "beef-up". So I will be jumping through some IEP hoops to get OT/PT services rearranged since she won't be at school to get them. We do some OT/PT activities on our own- but it is nice to have someone with more experience, training and resources to back us up.
Callie is just a spunky as ever and has been getting reprimanded for not being a careful driver in her powered wheelchair. Hopefully, we will be able to go to storytime at the library a couple times a month. (That way we have some choices as far as germpool exposure.)
Hope all of our buddies are staying well (or if not that you get well really quickly).
Germ free hugs to all!
Marcia & Callie

Wednesday, October 13, 2004 1:37 AM CDT

Good news!!!! We brought Callie home Monday afternoon- all full of hersel and everything. She has been very good so far about wearing her bipap at night, taking all her meds, and doing the full regimine of breathing treatments AND eating pretty good(of course the meds she is on help with that).
She is scheduled to get the g-tube placed on 10/29 at 9:15 am. Until then she will not be going too far from home so that she can stay healthy.
That is about it for now. Thanks for stopping in to check on our sweetie!!
Marcia

Wednesday, October 6, 2004 11:49 PM CDT

Day 9 of admission-
What a super day Callie had!!! She was take off bi-pap around 8:30 this morning and was still off when I left at evening report time 7 pm. She did great on 40% oxygen via face mask. We had agreat time playing all sorts of tabletop games and dolls and reading a couple of her favorite books. By BINGO time though she was beginning to need a nap and would NOT play the first round.(She busied herself writing a rainbow of notes in Mom's mini note book.)
The one down thing is that even though she is getting IV nutrition; she wants to eat some real food- asked for broccoli with cheese on it or pizza. Had some ice chips instead- then found out that not all the docs were in agreement aobut her having even that pleasure.(Too late- she already enjoyed a cup full.
No word yet but we hope to be moved out of PICU tomorrow(Thursday) we shall see.
Thanks for your support and prayers-
Marcia & Callie (and the rest of the fam too)

Friday, October 1, 2004 7:50 PM CDT

Hi friends-
Callie was admitted to Johns Hopkins on Tuesday with nasty congestion that caused respiratory distress. Thursday afternoon she bought a ticket to the PICU when her left lung collapsed. Today has been a pretty good day- but we will probably be int he PICU for the weekend or so and at the hospital for another week or more. There is talk of placing a g-tube once we get her respiratory issues cleared up- we will see. This sort of feels like a step back- but from all that I've seen SMA kids fare very well after they can get supplemental feeds this way. I am just extremely nervous about the anesthesia part of the procedure.
Any prayers offered up for Callies healing and our peace of mind are greatly appreciated.
I will try to update again on Monday.
Thanks for checking in to see how Callie is doing.
Marcia

Monday, September 20, 2004 8:24 AM CDT

Yikes! It has been way too long since Callie's first "update". She is dong great- weathered that first head cold without being admitted to the hospital. I guess we are getting the hang of dealing with stuff. She is oving school- but keeps missing days because there were several children and teachers out sick last week- and we don't wnat to take chances we don't need to.
She had a good visit with her pulmonologist last Wednesday. We are going to schedule a sleep study to see how crucial it is that she wear the bi-pap (breathing support) every single night vs. when she is sick.( Since Callie is absolutely not happy about wearing it when she is well- but resigns herself to the necessity when she is sick.)
She spent this past weekend with her "GA-Ga"(grandma) while Daddy went on a church related retreat and Mom and sis went to see big bro as he just finished Navy Basic training. Callie had a great time and "ga-ga" got a taste of Mom's daily life. (Not bad just busy- Callie IS 3 and knows what she wants- usually).
A crew from our church was scheduled to come out on Saturday and build a safe ramp for Callie- but the weather nixed that- so we will have to wait a bit longer while things dryout and the crew gets re-scheduled.
That is about it for now.
Hope all or litlle buddies are staying well- don't forget to get your flu shots!!!!
Prayers-
Marcia

Friday, September 3, 2004 4:24 PM CDT

Thanks for stopping by. Callie is doing well these days. She currently is keeping a head cold at bay- so far so good. Her power wheeelchair was recently in the shop; two weeks waiting for a part. she is now up and running and very happy about it. Callie started Head start Aug 30 and had a great first day. Her stuffy nose delayed her fun until after Labor Day though. I will be adding more basic information about Callie over the next week or so.
Have a great weekend, Marcia- Callie's MAMA

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