Day 7 (Wed) on the sickness

Hi friends,

***This was written very late on Tuesday night/Wed morning. 

Thank you for your prayers and encouragment.  I appreciate both! 

I'll start with the good news - Eliana is smiling again!  It's so heartwarming to see her beautiful smile.  I love to see her face light up and just radiate happiness.  She is a doll!  I'm taking her smile to mean that she is feeling better.  Yippee!  I wish I had a new picture to post.

This is DAY 7 of being sick.  She still has diarrhea - that's a long time!  Her bottom is still very red, sore and bleeding (though it seems to have diminished some this evening- Tues).  I keep thinking that it's got to end soon!  Usually these bugs last 24 to 48 hours, not days on end.  I'm thinking my friend RK is right - probably the rotavirus - which would explain why none of the rest of us have gotten it.  Our poor sweet baby. 

She is also not eating well.  She has not taken a full bottle at a feeding for awhile now.  She did better today than yesterday - but yesterday was not a good day.  She took about 5.5 ounces orally.  I obviously tube-fed her.  I'm thankful to have this option as I know it will help keep her home (instead of the hospital - not that you can always avoid this either!).  I'm trying to to be discouraged or worried about this set-back, though I'd be lying if I told you it hadn't crossed back and forth across my mind. 

I had someone comment today that I seemed like a wonder woman - and I have to say I am NOT a wonder woman!  I fail and fall down over and over again.  I hesitate to comment sometimes on my failings.  It's not that I want to be seen as perfect - I'm not even close!  I guess as a homeschooler I've heard too many stories of people that are falsely accused of not caring for their children properly and I would never want people that think that is going on in our home.  I love our children deeply and am very invested in their lives and their schooling - but I still fail and don't accomplish all that I would like to.

I thought today of posting that I was still in my sweats at noon - the sweats that I'd slept in after having been up until 4am.  (Thankfully I was also able to sleep in.)  I thought about sharing that I hadn't done any schooling with my children other than reading the Bible to them until then either.  Should I keep going and share how I lost my patience when they were loud and fussing with each other.  *sigh*  Things got better after lunch and we were able to get some good schooling in. 

I sometimes wonder who is going to learn more on this homeschooling journey - my children or me.  I'm almost certain it's going to be me.  I'm learning every day that it's not about me.  I'm learning that on my own, I certainly can't accomplish anything worthwhile.  I'm learning how much I need my savior - and His love, patience and wisdom each and every day. 

For it is God who is at work in you, both to will and to work for His good pleasure.  Phil 2:13

I remain thankful,

Leslie

Monday update on Eliana

Well, things are better - and a little worse.  Overall, she is healing from whatever nasty bug she has gotten.  Thankfully, nobody else has come down with it.  RK, I think you are probably right on what it is - rotavirus.  Not sure we'll know for sure (though they did do a stool culture, so maybe?).  Not that it matters at this point in terms of  treating it.  She is not vomitting, is able to eat some and fever has subsided.

The worse part is her diaper rash.  It's red and bloody (at times - not all the time but getting more frequent).  Poor sweet baby just cries when I lay her on the changing table.  :-(  She is sounding hoarse from her crying too.  It's so hard to have a little one in pain and feel that you can't do anything about it.  At least this pain is something that *I* can tolerate as I know it will get better.  When she was in pain after her heart surgery - that was scary and very hard for me to handle.  (I know it isn't about me, but as a mom I just want to take away her pain.) 

Anyway, I'm trying a variety of tips and tricks I've received from friends and hoping that some/any of them will help.  I've spent much of the day trying to help - and consequently my house is a WRECK!  We've gotten no schoolwork done - except the Bible lesson that Rebecca did for the little boys.  Guess a day off is good for all of us.  Oh, and speaking of Rebecca - she made all of us breakfast!  A beautifully decorated table and delightful smells greeted me when I came downstairs.  She had made french toast, fried pepperonis, breadsticks, fresh fruit and juice/milk for all of us.  What a sweet way to start the day!  Oh, and it was brunch which was even nicer for me since I got very little sleep last night as  Eliana was most uncomfortable.

I spent a good part of the afternoon trying some tips to help with her diaper rash.  I was told that rinsing instead of wiping and letting her have a good long soak would help.  So we tried this.  I had just spent several hours trying to get her to eat.  :-(  I thought getting her comfortable and then tube feeding her seemed like a good choice.  After her bath, I laid her in her crib and let her "air out".  I tried hooking up her tube which she did not want!  She tried pushing my hands away and cried for me to stop.  I did finally get her hooked in though.

After starting her food, I soaked a cotton ball with mylanta (to help with the acid) and dabbed it onto the diaper rash.  I continued to let it air dry.  I tried doing some laundry in between - and while I wasn't looking, she pulled out her feeding tube and fed the mattress.  *sigh*  I don't miss that!  I cleaned that up and started a new feed.  After letting her air out for awhile, I also put some diaper cream on, some cornstarch (to dry it out) on top and then a fresh diaper.  Within moments, she had diarrhea again.

My first thought was - I can't do this all day.  Then of course I realized that I can.  I can do this if it is what she needs.  It may mean that other things don't get done, but isn't that what happens in life?  We make choices with our time every day.  I've been trying to change my focus and instead of viewing interuptions as messing up my plans, I'm trying to think that this may be what God has planned for me today.  Whether it is an interuption of tending to a sick child or having a discussion that takes time away from something else, helping a friend instead of cleaning or whatever.  God has ordered my days and I need the reminder that my plans aren't the most important thing.  I'm hoping that I won't miss out on what God has planned for me by being so very focused on my own agenda.  This is a hard thing for me as I tend to be list-oriented and driven to accomplish things.  I'm learning - and I'm sure will have to continue to learn - to relax in regards to time, expectations and more.

I'm rambling for a few moments while I can.  LOL  I need to run to the store to try some different creams that have been recommended by friends.  I'm going to go see what I can find that might be a better help.  I appreciate prayers for wisdom in helping Eliana, wisdom in how I spend my time and mostly healing for our little girl.

I'm thankful that I can be home with her.  I'm thankful that she is feeling better.  I'm thankful that nobody else is sick.  I'm thankful for a dear friend that brought us a delicious dinner on Saturday - enough for several meals.  (Thank you Heather!)  I'm thankful that while my little girl isn't feeling well, that she is well enough for me to care for her at home and doesn't need a trip to the hospital. 

With a grateful heart,

Leslie

Saturday update

Thank you all so much for your prayers! I appreciate them all - those who have posted and those that are reading and praying without posting.

We met Eliana's ped this morning. I apologized for calling her and she was so kind about saying that it was no problem. I had told her last night that I'd never had a sick infant before and didn't really know what to do. She was amazed that with my "herd" (her word, not mine ) that I hadn't had to deal with this before.

Eliana was still running a fever - about 102. Still having diarrhea and a very sore bottom. Her bottom started to bleed while we were there. She did more blood tests (took the nurses 3 pokes to get it) and found that her numbers showed she is getting better. Dr L said it would still take time for it to get completely out of her system. I'm to try to manage her pain and just wait it out. She also told me to call if her fever spiked again or something else was wrong. I am so very thankful for her!

We would love continued prayers for

• Eliana's health - that she would recover soon and feel better.


• That her sore bottom would heal


• Continued health for the rest of the family


• Wisdom in caring for her - and patience in trying to juggle other demands

Overall, she does seem better. While she has a fever, it is nothing like the scary temps last night. She still is not smiling though which tells me that she still feels badly. Her eyes are red-rimmed and her little face is so pitiful. She is still having diarrhea often which means that her bottom hurts a LOT! She cries and cries with each diaper change. I've been using diaper creams and also tried washing in the sink on the last change (water instead of wipes) and she was much more comfortable with that! Thank you to a FIAR mom for suggesting it!

I'm amazed and thankful that this has not spread through our family. I'm not even sure where she could have been exposed and not the rest of us. It's going to make me feel a little more paranoid or vigilant about keeping her hands clean and away from things. This is the one thing I dislike about winter.

I'm very tired and looking forward to some sleep! Thank you dear sisters for your prayers.

With love,

Leslie

Fri night 11pm

Well, I had thought earlier that this was going to be a quick passing of whatever germ she has - but unfortuntately its going to last a little longer.  I've spent most of the day holding a precious baby that just feels pitiful. 

She is still feverish - had a temp of over 105 at 8pm.  She has diarrhea (sp - I should look that up!) which is making her bottom very sore!  (Yes, I'm putting cream on it though wish I'd thought to do it before it became raw.)  She is able to eat some, but has just been miserable for hours now.  When she isn't sleeping (usually on me)  she is often crying.  She just feels terrible - I'm not sure she has really even smiled today.

I did finally call our ped tonight when her fever was so high.  I gave her tylenol and it brought it down to about 103.  She advised me alternating with motrin.  She also thinks that she is probably just fighting a yucky virus since all of her bloodwork came back clear yesterday.  She is on call tomorow and wants me to bring her in early in the morning.  I hope she doesn't mind my calls.  I really do hate to bother her.  Why do I doubt myself sometimes?  I know I'll get more comfortable as time goes on - I can see it in other areas.  This is all uncharted for me though.  I'm thankful to have friends helping me on this path.  I'm so very thankful for the prayers and encouragment I've received.  God is good.

I was pacing with her earlier and pondering on how thankful I am that we live when we do.  For now, Eliana's health issues are treatable.  Even though serious and scary at times, her surgeries and medical procedures have all gone well.  In a different era, she wouldn't have made it, but now she has so many opportunities ahead of her.  I've been reading a couple of blogs of other children that are struggling with so much more.  It breaks my heart - and urges me to pray.  It reminds me anew that I  have so much to be thankful for!

I appreciate your prayers for Eliana and our family.  (So far, there are no signs that anyone else has any of this crud.)  I am thankful for much tonight.  It's been 3 hours since her last dose of tylenol and her fever is back to 104.  Time for the alternating meds.

Hug your children, tell your spouse that you love them, say a prayer for those God lays on your heart.  Give thanks.   God is good all the time.

Blessings,
Leslie

PS  Will update more tomorrow.

Fri about 12:30pm update

Hi Friends,

Thank you for your prayers and encouragment!  Eliana is doing better - though still not well.  I am encouraged and still hoping/praying that it will end soon and not pass around the family.

I stayed up with Eliana until after 3am.  She took a couple of small doses of pedialyte orally at midnight and 2am.  She also rec'd tylenol at 2am.  She did not throw up again and I didn't give any more formula.

She awoke about 7:45 and was fussy ,feverish and still having diarrhea.  I didn't take her temp, but just gave her tylenol.  I took her temp about 1.5 hours later and it had gone down to a little over 100.  I gave her pedialyte orally and she took 4 ounces.  She was hungry I think, but not sure about the temp (cold).  She normally takes her formula warm.  It's also thicker and I wondered if she would be bothere by the thinner consistancy of the water, but it didn't seem to matter to her.  That's good news!

Her ped called to see how she was doing.  She had also talked with the dr on call last night to fill him in on Eliana in case we had needed help.  Have I mentioned today that she is wonderful?!  She recommended that I try giving her a small amount of formula at her next feed to see how she would tolerate it.  She doesn't want her to lose too much caloric content since she has done so well to put on weight.

I fed Eliana again about 11am and she took 100cc of formula.  (A little over 3 ounces)  She typically takes 140cc.  So far, she is doing well with it.  She is currently napping on me.  My other sweet daughter just came in and suggested that I should take a nap while Eliana is sleeping.  Have I mentioned what a blessing she is to me?!  I need to go tell her that.

In terms of symptoms, it seems to be all G/I and not respiratory at all.  (Thankful to have skipped that part!)  It's just a waiting game now for her symptoms to go away.  She seems to 'feel" better at times and then gets fussy again.  We are just going to relax today and take it easy.  Dr L recommended that our week-end plans be cancelled - and then I shared what they were.  After hearing that we were planning a tea party, she wanted to find a way for Rebecca to be able to do that - wondering if I could pass on my responsibilities.  Those of you that know me, know that is hard.  I don't want to dump my work on someone else.  I'll do it though if it is what works best for everyone.  I have learned a lot about letting go of things this past year.

Will update more as I can.  Thank you for your prayers for our precious little girl.

With love,

Leslie

9pm update ...

Eliana just woke up from a long nap.  I thought it best to let her sleep.  She is burning up.  Temp over 104 again..  I fixed her a bottle - which she wanted.  She drank a small amount - less than an ounce - and then threw up.  :-(  My poor sweet baby.  I hate that she feels so badly. 

Please pray for her health and for wisdom as we treat her.  Pray that this would pass quickly from her - and not  pass to the rest of the family!

On a personal note, I've committed to do some things the next couple of days and I'd love wisdom on how to either do them, ask others to do them or just let them go.  I know my friends will understand.

Off to be with my baby,

Leslie

Update at 7pm on Eliana

When we arrived at the ped, Eliana's temp was at 104.3.  :(  Guess I do need to add a degree to my thermometer.  They did a variety of tests on her to try to determine the cause of the infection.   (She wasn't thrilled with any of them either.  Her ped commented that this was only the second time she had seen her cry and the first was after her open-heart surgery.)

*Urine - (put a bag on her) - all looked and tested fine.

*CBC - (blood) - All blood counts are within normal ranges.  No  numbers alarming in any way.

*O2 Sat - (oxygen) - Her numbers were at 97 which is good.

*Ears - no sign of infection

*Heart/Lungs - All looks good there too.

*G-tube site - looks good, no signs of infection

At this point, there is nothing "blatant" that lets us know what is causing the infection.  She thinks it is probably a virus that will just need to run its course.  She didn't want to prescrive antibiotics (which I'm in agreement with) unless they were needed.  If this does go to her ears, we want to be able to treat that, but not give her meds unnecessarily.

She said it could be respiratory which would turn into a cold type of sickness.  She thought it more likely that it is a gastrointestinal (due to the loose stools) which could mean she ends up dealing with more diarrhea or worse, vomiting.

She is able to eat some, but I'll use the tube if needed to keep her hydrated and as healthy as possible.  This is just exactly what Dr. L is afraid would happen in the winter and why she wants to keep her tube in place.  I'm going to offer foods orally and let her take what she will. 

She is still soooo very hot - even with the tylenol.  She is uncomfortable when awake and is currently sleeping on my lap.

We talked about what we'd done this week.  Most of our outings have been doing things outdoors - the Buddy Walk, picking up things at the State Fair & Farmers Market, going to a corn maze - and one indoor activity was Kindermusik.  The music class was 2 days ago so it fits.  None of the rest of us are sick.  I'm so sad that it has hit my sweet baby girl.

Please continue to pray for her healing.  Please pray that she does not throw up!  The thought of her having to deal with that makes me sad.   The good news is that she looks good overall and the ped said she is in a better place health wise to deal with this than she was a couple of months ago.

Please pray that the rest of us would stay healthy and that I would find balance in the things I need to do.  I know that this is part of God's plan for us and I'm trying to relax in it as best I can.  I know that the prayers of many are aiding in that so much!

My boys are cooking dinner tonight to go along with their FIAR book.  It smells good (and I really hope nobody gets sick after eating). 

With love,
Leslie

PS  Forgot to mention that our sweet ped is  going to call me tomorrow (she isn't in the office to check on Eliana).  She is also on call over the week-end in case we need her.  She is just the best!

Prayer Request for Eliana

She is just not feeling well today.   She woke up in the night - fussy.  Really not like her.  When I picked her up she seemed warm but I wasnt sure if it was from the blankets or a temp.  She also seemed to be a little runny-nosed. 

Well, I just took her temp - at least 101 under the arm.  I finally stopped as it was taking sooooo long.  I'm not sure if this is one of the thermometers that adjusts for under the arm or not which is why I said it was at least 101. 

She is also loose (for her) and just miserable.  She wasn't able to take a fully bottle this morning and just sobbed until she fell asleep in my arms. 

I have a call in to her ped.  I'm just not sure if she needs to be seen or not.  With my others I would give tylenol and wait.  I'm fine doing this with Eliana too - but I'm unsure.  It makes me feel like a new parent again.  SHe just has other issues to consider - heart, feeding/tube and Down syndrome.  I don't want to be negligent because I'm not doing the right things, KWIM?

For now, I'm holding my sleeping baby and praying for her health.  I'm trying to remember that God had this as part of my plans for the day.  While my plans included planning for a class I'm teaching on Sat for our Keepers Group and the following tea party as well as planning for our hs groups family event next week - well, they may have to wait.  Oh, and I was hoping on our first day home this week just to relax - just not in this way.  This isn't an interuption, it is what I'm intended to do.  (Talking to myself here.)

I'm so very thankful that she has not been sick until now.  Considering all the times we have been in and out of doctor's offices and the hospital - that is a praise!  Like most parents, I just kept hoping that she would never get sick.  Now, just praying that it passes quickly.

Need to run - chaos in reigning in the rest of the house.

Blessings,

Leslie

 ETA:  Took her temp at 1:30 and it was up to 103.  This was after being asleep on me for a good long while. 

We are going to see our ped at 5pm.  Any of my other children and I wouldn't be going in.  They even said the same thing - if it were another child she probably wouldn't need to be seen.  With all that she has had though, they want to be careful and I do appreciate that!  This is Eliana's first time being sick.  I knew it would come, but am so sorry it's here.  She is being a little angel about it though.  I've held her most of the day and that has kept her happy.

They had no appointments for today - just after hours with a doctor I don't know or going to the other office where we also don't know anyone (which I told her would be fine).  She had me hold for a moment and then came back and said our ped would meet us at 5pm.  :hcry:  She is so very wonderful to us.  This isn't the first time she has met us after her work hours have ended.  Thank you God for placing this woman in the hospital when Eliana was born. 

The tylenol has helped with her fever (down from 103 to about 100.5).  They want to make sure there is no infection at her tube site - and just generally check her out.  She does seem to be feeling better since the meds - though still has a fever.

Thanks for your prayers.  Will update more when I can. 

Love,

Leslie

The Buddy Walk

I think the thing that surprised me most was not the large crowd or the variety of activities or the beautiful children - instead it was the number of times I felt my eyes filling with tears.  I had not anticipated that.  I guess in some ways there will always be tender spots in my heart that just weren't there before.  Spots that are touched in ways I don't expect but will probably grow a little more accustomed to.  I'm not even sure why the tears were so close to the surface.  I wasn't saddened by being there at all - in fact just the opposite.  It was a wonderful day for our whole family!  I remember the first thing to bring tears were the numbers of people as we were driving in.  It can seem a solitary life at times - and we've been so isolated this past year.  Seeing lots of cars and lots of people just seemed like a statement that we weren't in this alone.  It was so encouraging to see lots of people there in support of those with Down syndrome.

We decided at the last minute to join in on the Buddy Walk.  I didn't really know what to expect, but since we were free we thought it might be fun to check it out.  I am so very glad that I did!  What an amazing job this group of volunteers did in putting together this event.  I have had only a little contact with members of this group via email and one mom's meeting - and I knew there to be a lot of generous and warm-hearted people involved.  This event far surpassed any expectations I might have had.  In addition, it was a gorgeous day!

We arrived around 12:45 and parked in the specified lot. There was a trolley to take us to the park (not a long walk, but it was a fun ride).

When we arrived we checked in and received t-shirts and goodie bags. We walked into the event and saw so many things including mounted police, chalk, bubbles, lollipops ... and a pirate! I was thrilled just knowing our pirate-loving son would love this! He hid behind the stroller!  We tried to get our outgoing, never-meets-a-stranger son to talk with the pirate and pet the parrot - but nothing doing! His brother tried on the pirate hat and wore the parrot on his shoulder.

There were lots of games and activities from balloon making to face-painting and moon bounces. There were celebrity figures like the local sports mascots and a tv reporter. We debated on what to do first, but the children were hungry so we ate. Hotdogs, fried chicken and lots more to choose from. We definitely had our fill. The children were very excited about the sno cone machine too!

There was a silent auction. We understood this a little better and made a number of bids. Rebecca helped to keep an eye on some of our bids as it got close to closing time. We won three auctions! I think I have a couple of Christmas gifts in hand now. When I told Roger about the auction and suggested he might be interested in checking it out. He asked what I bid on. He wasn't surprised that the first item was ... books. LOL

We went on a short walk - maybe 1/2 mile. We started a little late as Eliana was eating. There was no room for Christopher to race ahead ... so he walked with us ... most of the way. It was a leisurely stroll made all the more enjoyable by many signs along the way with photos of children in the group with various sentiments on them. I found the tears again - some of the only sad ones - when I saw a few signs that were "in memory".

After the walk we went back to hear Chris Burke (actor who played "Corky" on the tv series "Life Goes On") and two brothers in concert. They sang lots of fun songs and Chris talked about the importance of focusing on "ability" and not the disability. He was funny, entertaining and encouraging. Rebecca loved his music and bought 4 of his tapes. We also had some photos taken with him.

I saw some gals that I'd met at the Mom's meeting. It was so nice to see a familiar face! I also met a gal I'd talked with on the phone. She sees the same ped who had connected us. I recognized her from a photo in a booklet put out by the local DS group. Her oldest daughter also spent time talking with Rebecca and answering her questions about what it was like to have a sibling with DS. They are lovely and it was nice to finally meet them. I also ran into a gal I'd met at the homeschooling conference and was able to spend some time with her as well.

One of the things that I enjoyed about the day was seeing the children. So many beautiful faces - enjoying life and the gorgeous day. It was nice to have soooo many people comment on Eliana - how cute or beautiful she is. Nobody looked away and many just had to come up and talk. It was sweet.

When the event drew to an end, we visited the playground for a while and unfortunately missed the last trolley. It wasn't a bad walk and was a nice way to end a delightful day.

I'm thankful we had the opportunity to go and I look forward to going again in the future. If any of you reading are local and would like to go with us, we'd love to have you join us.

There are so many things to be thankful for - and I'm very glad that God has placed us right here! 

With love,

Leslie

PS  As I look at our photos, I realize that  Roger was behind the camera most of the day and thus I don't have many photos of him.  Christopher didn't want to be in any of the photos - though I did get a few.  I have a lot more but some weren't the best/most flattering so they will stay in our family albums.

Short PRAISE!

What a full and fun day! I want to post all of the details and share some fun pictures with all of you.

I hope you’ll forgive me for not doing it tonight. Eliana finished all of her feeds by 11pm today!!! That is a first!!! She has NEVER before finished before midnight! I’m going to take advantage and go to sleep a little earlier than I typically do.

I will say that the Buddy Walk was awesome! It was soooo much bigger than I had anticipated. There were hundreds of people there. So many things to do – and it was just great. I ran into a few gals that I had met before which was neat. All of us enjoyed our day and look forward to doing this again next year!

I’ll try tomorrow to post more details and photos too!  Here's one though that captured all of our feelings.

Blessings,

Leslie