Birthday and more about our week

I had thought on my birthday that I would write a list of all of the blessings I received on that day.  From early morning birthday wishes via email (before I went to sleep) to messages on the FIAR board, to a chorus a precious voices singing Happy Birthday to sweet friends notes, cards and calls. 

My youngest children of course were up early.  Only Christopher & I ever want to sleep in.  LOL  He gets to on many days and I'm looking forward to my turn!  Rebecca and Joshua cooked a breakfast for me to have in bed.  They brought up the tray of delicious food (bacon, grits, biscuits, juice and milk) while singing to me.  They also had many gifts for me to open.  Daniel was quite taken with the gift he had presented to me - a candy bar - and carried it around for quite a long time examining it and asking me questions.  I'm surprised he didn't try to eat it!  My sweet girl gave me 4 cards!  Two she had bought and two she had made.  All were very sweet and indicative of her tender heart. 

She tried to corral the boys so that I could rest after breakfast.  I tried to sleep amid the boys coming in and out to ask me questions or tell me happy birthday. 

Catherine brought me a yummy smoothie in the afternoon.  For dinner Roger and Christopher cooked (low country boil - shrimp, corn, kielbasa) a great dinner.  Christopher also made me a CD of many of my favorite songs.  It was a thoughtful gift from him.  I am truly blessed and have much to be thankful for.

Other happenings this week as I'm somewhat behind in my writing.  I'm behind in so many things that I feel I shall never catch up.  Though don't we all feel that way to some degree?!

Physical therapy - All is going well.  It's fun to see Eliana learning new things and for me to learn new games and ways to play with her that will benefit her development.

Feeding therapy - I told our therapist that since the last meeting she had greatly improved!!!  She has not refused the bottle since July 31!  This is a wonderful praise!!!  She typically will take from 1-2.5 ounces at a feeding.  Over the last week she has taken from 7 to 10 ounces per day.  This is up from 4 being a great day in the past.  Last night she took almost 4 ounces!!!  I was thrilled.  I was choking back happy tears.  It's times like this that make me think that maybe there will be a light at the end of the tunnel.

Keepers of the Faith - We belong to a group of families that plan and teach various skills, hobbies, crafts and skills to the children in a variety of areas.  It is similar to scouts in that the children work towards earning badges.  There is a Christian focus to the program.  We had our planning meeting for the year last night.  It was during this time that Eliana had her great feed!  She had been asleep through most of the meeting and had gone a little long for her feed - but it was so worth it to get such a great one!

Homeschool - We are plugging along.  We haven't gotten done all that I wanted to this week, but all in all we had a good week.  It's been fun watching Isaiah learning to read.  I'm hoping that we can get into a good routine so that we can be more productive.

Medical equipment - We have had quite the saga regarding getting the items we needed.  This week I received a shipment of NG tubes - that we no longer need.  The kicker though - they were still the wrong size!  This is the 3rd time they've sent the wrong size.  I called today and talked with several of the gals and hopefully we'll have it straightened out soon.  Later this afternoon I received another package and it's a new extension to the pump/button.  It's also the wrong one!!!  Lastly, I received a bag in which to carry her pump that is supposed to help make it easier to go out.  I haven't tried it out yet, but hope to soon.  the surprise to this one was the price tage - $400 for a nice backpack basically.  I'm thankful we have insurance.  It's amazing to me the price tag on some of the medical equiment/supplies.

More later as I'm about to fall asleep.  I want to upload some photos and share a verse. 

ETA:  It's morning now and I have a few moments before Catherine and I head out for spa pedicures.  Happy Birthday Catherine! 

Love,

Leslie

Feeding Progress and More

Hi Friends,

I first want to thank y'all for praying.  My heart is sad and I know that it's just going to be this way for awhile.  I'm trying to focus on the positives, and there are so many of them in my life.  There are times though when it is just hard.  My dear friend Catherine will be moving in 2 weeks.  It's just too close now to deny any longer.  We don't talk about the emotions too much - but they are still there.  We can each see it in the other's eyes.  The words unspoken yet still there.  I knew when she hugged me at her daughters's party that she too was thinking of it being the last.  The last one where we will run around helping each other to prepare and pull off a party. 

As I go through my days, so many memories come flooding back.  Memories made over many many years.  Sweet memories of times spent together.  Also memories of trials and walking those together as well.  We have been so blessed to have had 17 years of friendship so far.  We know God will work in this, though it's hard to understand from this point what His plan entails - and how good will come from it.  Please pray for my precious friend as this is a very hard time for her.

Feeding - I'm so excited to be able to share good news!!!  I've hesitated in posting, in getting my hopes up that perhaps things were really changing for the better.  I do think that they are though!

I think I shared that we met last Tues with the feeding therapist and she had her first good feed there - ever.  One small change we made was in holding her hands in front of her during the feed.  She used to do this herself.  I loved the way that she would put her hands on mine as I held the bottle.  She hasn't done this for awhile.  Since that feeding she has taken food from the bottle EVERY time I've offered it!!!  This was not the pattern before at all.  She has taken at least an ounce at all but 2 of the feeds since then too.  (Both of those feeds she fell asleep and couldn't be wakened.)

She has also taken several feeds of over 2 ounces!  This is so encouraging!  She has eaten 7.5 to 9 ounces per day over the last three days.  Before a good day was 4-5 ounces.  We are definitely improving!  Now we need to work on building up her endurance. 

I asked her feeding therapist today if she thought Eliana would ever be able to eat fully from the bottle or if we would just end up transferring to eating other ways.  She said that she thought Eliana would learn to eat!  I can't tell you how many happy tears I've cried when she has drained her bottle.  This prolonged period of success (one week) has given me hope - hope that my little girl will learn to eat.  Thank you God!

G-tube - We haven't had the button pop open all the time.  I'm trying to keep her in a onesie to hold it down or using paper tape (which isn't as irritating to her skin).  It does still happen though.  One night she pulled the connector tube out - during a feed - which made a colossal mess!!!  She was asleep - in wet clothes, a wet diaper and on a wet bed.  Poor baby.  Lots of changing and cleaning and then rocking back to sleep.

 A new problem is that there is a red place under her button where the skin is irritated.  This showed up on Fri - after I had seen doctors and people every day of the week.  *sigh*  Isn't that the way that it is sometimes?  I thought perhaps it was due to the "belt" I'd had around her to keep her button closed.  I stopped using this and waited a couple of days.  It hasn't improved.  I called the ped office and was encouraged to put bactraban on it.  I do hope that it will clear it up and that the area wouldn't get infected.

Schooling - We have started back and are easing into things gradually - or at least we are trying to do it slowly.  Isaiah read his first words yesterday in his reading lesson.  Way to go!  That is always an exciting milestone.

I'm reading a book to the boys that I wish I hadn't started.  I had given the boys a choice of which book we would study this week and Joshua picked Amber on the Mountain.  I have frequently chosen this as a start to school book since the main character in the story learns to read.  I thought it would be a good choice since Isaiah is learning to read also.  The part I had forgotten about were the lessons on friendship and the pain of a friend moving.  I could hardly make it through the discussion.  It is appropriate in the timing, but hard too.  Maybe it is something that needs to be discussed with the boys.  Joshua has such a tender heart.  I remember once he asked if it was alright to cry when our friends moved.  I of course told him that it was.  He then asked if it was alright if he cried bucketfulls of tears. 

Christopher is starting high school.  Things are going well.  It's really just an extension of what we have already been doing.  We aren't going to change what has worked well for us thus far and one day hope to start back on the many field trips and the travelling that our family enjoys.

Not surprisingly, it is late.  I'm headed to bed soon.  I would love to share a few prayer requests with you.

Prayer requests:

*Continued success for Eliana in eating.  Pray that her endurance would improve and that her desire for food would grow as well.

*Healing around her button and no infection.  Wisdom in knowing if/when she needs to be seen by a doctor.

*Catherine's family as they prepare to move and all of the difficulties in entails both physically and emotionally. 

*The hearts that are aching due to this move and the changes that will ensue.  It's going to be hard on our children too as they are used to running back and forth between our houses many times a day.  I was listening to Catherine's daughter reading a Bible story to one of my boys today.  She asked him questions about the story and personalized it with names of extended family and where they lived.  It vividly reminded me of how much we know about each other's lives - from having lived them side by side - not just Catherine and I, but our families as well as many other friends.

I've said these before, but I think I need the reminders.

The Lord giveth and the Lord taketh away.  Blessed be the name of the Lord.  Job 1:20-21

And we know that God causes all things to work together for good to those that love God, to those who are called according to His purpose.   Romans 8:28

Thank you for your prayers and encouragment.

With love,

Leslie

Birthdays ... how can they be bittersweet?

It's early ... well, for me it is.  My day ended late last night and began earlier than I wanted this morning with my 2 youngest boys up at 6am.  Everyone else is asleep even now 2 hours later.  Wish I was one of them.  I'm hoping a nap is in order later in the day!

Birthdays ... we celebrate 4 of them this week between Catherine's family and mine (mostly her family with 3 of them).  Her girls had a fun party yesterday.  As we were preparing - running errands, getting food and games ready - Catherine gave me a hug.  I know that the thoughts running through my mind were in hers too even though they were unspoken. 

We have done birthday parties together for so many years.  We even joked at times about starting a party business - sometime when ours were all bigger.  We have always helped each other - baking/decorating cakes (her for me), decorating, running errands, and anything else that needed to be done.  We've been celebrating birthdays together for 17 years now.  Our birthdays are just 3 days apart.  I counted in my mind that we have celebrated about 100 birthdays between us and our children.  We both can't help but wonder how this will change.  We'll find out soon as two of my boys have birthdays next month - just 6 days apart - like her girls. 

Oh, this probably isn't the best way to start the day - pondering, thinking and crying.  I don't understand God's timing in all of this.  I remember when Eliana was born how often I heard people remark that I was fortunate to have Catherine to walk this road with me (she also has a child with DS).  I know that she will still be there, but not in the tangible way that we are both used to.  Living beside each other has been an incredible blessing. 

I can't type more.  My heart just hurts.  Please pray for my precious friend as their move is drawing close.  Please  pray for our families as this is hard for our children, but mostly for Catherine and I.  I'll write more later about our week and some of the positives with Eliana's feeding.

Thank you friends for praying.

Love,

Leslie

 

Jesus Loves the Little Children

Just last night I was singing this old song to Eliana as she was splashing in her bath.  As I sang the first line, she broke into a her endearing grin.  It was as though she understood the words and her joy just spilled forth from her bright eyes to her toothless smile.  It was a precious moment.

It gave me time to reflect on some of what has happened in the last couple of days as I pondered the fact that "Jesus loves the little children, ALL the children of the world."  ALL the children.  Something the world hasn't quite learned yet - though something I see played out in my life everyday.  From friends that are parenting children with special needs to others that are adopting to others loving children daily in spite of their actions.  It's these sweet moments that I need to remember as they are ones that give me a glimpse of God. 

This song and others are ones many of us learned as children.  Jesus loves me is another one of my favorites.  One of my friends commented on this verse in a slightly different way, yet one that also makes a powerful statement. 

Jesus knows me, this I love.

Yes, He knows me - you - all of us.  And in spite of our mistakes and flaws loves us deeply.  I often tell Eliana that - Jesus loves you - even though at the moment she may not understand how much Jesus loves her!  The last couple of days have given me times to ponder this thought, especially when it is confronted with the fact that the world often does not love "all the little children". 

We visited the Down syndrome clinic on Thursday.  I was asked many, many questions about our family history.  I know that they are trying to understand, but honestly can any of us really know why God creates some chlldren differently?  Other than it being one more opportunity to give Him glory.  I know that some of what happens in this world is just a result of living in a fallen and broken world.  It is this backdrop of pain and suffering that really shows the love, compassion and grace of our Father.

I talked with a developmental pediatrician who was very nice.  She explained some of what they do at the clinic.  Our visit was short as we are already connected to many of the services that they provide from eye, ear, cardiology, physical therapy and occupational therapy.  The doctor told me we were doing a great job in getting Eliana the things that she needed.  It's always nice to be encouraged by a professional even though it isn't the approval that I need to seek.

She also talked with me about the blood test.  They will be testing her thyroid function.  It's been normal thus far, but can change and is often a problem in people with DS.  They will also be checking for leukemia.  Oh, just the mention of this caused tears to well up in my eyes - as even now they are there at the thought of it.  Seeing the hurt in my eyes, the dr commented that this was very treatable in children with DS.  It isn't a road that I want to walk - though it also isn't my choice either.

When we arrived at the clinic and I talked with a nurse, I told her I wanted to put emla cream on Eliana's arm to numb it in preparation for her blood draw.  She told me that wasn't a good idea as it constricted the blood vessels and made it harder to get a good stick.  She seemed so sure and yet, I do trust my ped who prescribed the cream.  I also know what it has been like in the past.  Painful.  Difficult.  Sometimes unsuccessful.  I wasn't insistent, yet sensing my concern she agreed to put it on her "best" arm.  She told me that she would do this since the vein looked good, but that the other arm would be a back-up if needed. 

When she went to have her blood drawn, the tech was able to get a good stick the first time.  The cream was working too as Eliana did not cry.  As we waited for the vial to fill, it was then I became thankful for the cream.  We waited and waited and the tech commented on how sloooowly her blood was coming.  I secretly prayed that she would not have to do a poke in another place.  We waited for a long time - maybe 5 minutes?  She did get it all.  Through the whole thing, not a peep from Eliana.  She did try to grab the tubing though.  That's my girl - great at pulling tubes.  LOL  So we had a successful blood draw with no pain for Eliana.  Thank you God for this answer to prayer!

We should hear the results from the bloodwork in a week or so.  This gives me yet another opportunity to just hand it over to God.  It isn't any use worrying about it as it won't change a thing.  If something is wrong, then we will deal with it when we need to.  I'm going to try not to borrow trouble as each day has enough of its own.  ;-)  So many lessons for me.  I wonder at times if I'm just not getting it and that's why I keep getting new opportunities.  I can be stubborn.  Either way, I hope and pray that through it all I will learn and God will get the glory.

Since we arrived at the clinic as the first patient, we weren't in the waiting room much and didn't have much opportunity to see others.  I had wondered if I might have a chance to talk with another Mom or meet another child with Down syndrome.  This wasn't the case though.  I did see children in wheelchairs and with a variety of other special needs and it hurts my heart.  It hurts for the pain these children experience as well as that of their parents.

A Mom on my homeschool board shared that she needed prayers for her hurting heart.  Her special needs daughter was being excluded and it was hard to keep her heart from becoming hard.  Other Moms of special needs children understood this pain.  The pain of having siblings invited to a party while one is excluded.  The pain of comments from others.  The pain of distance or even just the look from people who don't understand - and don't really want to either.  I haven't had much experience with that yet.

For now, most people think Eliana is cute.  I love hearing those comments.  I think she is so beautiful, though at first it was hard to see past her differences.  I'm sure that will be true of others as well.  Another mom of a baby with DS shared with me recently that she thought it was easier in some ways now - with a baby that is cute.  What is it like though when they are children and even more so into adulthood.  Those are things I don't need to worry about now, though I'd be lying if I told you that the thoughts never entered my mind.  It's often when I hear from other Moms who are hurting or when we do get an odd look. 

It's then that I try to focus on the truth that Jesus loves me.  Jesus loves Eliana.  He loves all of us - just as we are.  I wonder sometimes if my vision will change.  Will I be able to love more fully now?  Will I have more compassion?  Will I have a greater understanding of how much I am loved?  Will I have a greater knowledge of how much I need a Saviour?  I think so.

I love you, O Lord, my strength.  - Psalm 18:1

Let all that you do, be done in love. - 1 Cor. 16:14

With love to all of you,

Leslie

Tuesday's appointments & Family Photo

We met with our ped on Tuesday.  I'm so glad that she is back in the country!  She is always happy to see us and so helpful too.  She also spends a lot of time with us which I greatly appreciate!  I know I've said this before, but Eliana has definitely had more doctor's visits than ALL of my other children combined.  I'm sure she reached this in the first couple of months of her life too.

A funny - the nurse that typically checks us in always mispronounces Eliana's name.  When I corrected her, she laughed and said that it was good that we didn't come in more often so that she had time to get it right.  Huh?!  We have been in there almost every other week for months!  LOL  Guess it is easy for some to forget.  Though when I walk in the door, I'm greeted by name and they get Eliana's file without me saying a word.  So I guess we are known by others there. 

Dr. L and I talked about a number of things and she gave me some recommendations.

FEEDING - She is fine with decreasing both the number of feeds (from 6 to 5) and the amount (from 150cc to 140cc).  I'm also fine to spread out the feedings to 3.5 to 4 hours instead of every 3 hours.  Since Eliana has been at the 90% for weight, she feels it is fine for her to move down the curve a little more.  In the last week with decreased feeds she has not gained any weight.  I think she needs the decreased volumes for a number of reasons - mainly because it will be hard for her to ever be hungry if she is always overfilled.  She also suggested that I flush her tube with more water to increase her fluid levels over the course of the day. 

BLOODWORK - Eliana is scheduled to have this done at the Down syndrome clinic tomorrow.  Dr L said this was fine for the first time and then we could have it done at the ped office in the future.  She looked at Eliana's arms and thought she was still going to be a hard stick.  Poor little one.  She gave me a prescription for a cream to numb the area prior to getting the blood drawn!  It takes about an hour to take effect so I really want to time it right - so it is working and hasn't worn off.

G-TUBE - The button popped open twice while we were there.  Eliana didn't have her clothes on and was rolling around on the examing table.  Dr L didn't like this at all.  She immediately got on the phone with the surgeon's nurse (friend of hers and the gal that helped me last week) to see what could be done.  Basically, we just have to make do for at least another month.  We can then schedule to see them and have a different button put in.  (A mic-key.)  I told her that I was concerned that I would only be trading one set of problems for another as this is what it has seemed like with the change from the NG to the G.  She shared the the nurse had said the same thing.  *sigh*  At least most of the problems with the G seem to be for me to deal with and not Eliana.

THERAPY - She is encouraging me to get an evaluation on speech as well as start OT. 

Our feeding therapy went well too.  For the first time she had a good feeding while we were there.   (She took about 1.5 ounces.)  The therapist held her hands in front of her chest and this seemed to help.  It's something that she used to do on her own - that I loved - but hasn't done so much any more.

The following feedings yesterday were also good - for where we are now.  She took 1.5 and 2 ounces!  I am thrilled and am hoping that maybe - just maybe - this is the start to something good!

She has done well today for the feedings in which she has been awake which was just two of them.  She took over 3 ounces total.  Again, I'm very encouraged. 

Prayer requests:

*Tomorrow we go to the Down syndrome clinic to meet with a doctor, genetic counselor and to get bloodwork done.  Please pray for this to be a good - and not too lengthy time.

*Bloodwork - Please pray that they are able to find a vein easily and on the first stick.  Please pray that the numbing cream would be timed just right!!!

*Feeding - Pray that she would continue to improve and be able and willing to eat at each feeding!  I so want her to learn this!

Here is our most recent family photo.  I know - I should have taken off my glasses.  I tried in a couple of photos, but can't open my eyes in the sun. 

Will update on the clinic visit as I'm able to.  Thank you for your prayers and support!

With love,

Leslie

Praising God!

Just wanted to update on Eliana's appointment today with the ENT.  Just to update those that may not remember, Eliana failed a hearing test as a newborn in the NICU.  We went back a week later to try again and she failed then too.  We didn't follow up for awhile as we were just overwhelmed dealing with a baby in heart failure.  Heart failure just pushed everything else off of the "to-do" list.

After her heart surgery, we had another test done.  Another failure.  At that point, they began talking with me about possible hearing loss in one ear.  The right ear has always passed and tested fine.  After this appointment (with an audiologist), I immediately set up an appointment with an ENT for further testing.  This appt was in early May and once again, Eliana failed in her left ear.  At that point the ENT wanted to wait for a couple more months.  It appeared that there was some fluid in her ear that may have been causing problems.  He said if she was still failing the test in a couple of months, that she would probably need to have tubes put in her ears.

Fast forward to today.  I have been praying for clear test results.  If there are problems, I wanted them recognized so that they could be treated.  Of course I was also praying that her hearing would be fine.  We were seen shortly after arriving by an audiologist.  She was glad to see that Eliana was sleeping as she thought the test would go better. 

We talked for a few moments before she started the test.  She asked how things had been going and I told her that it had been a little tough - and that she had g-tube surgery just 2 weeks ago.  She began the test in Eliana's left ear - the one that has consistently failed.  She looked over at the test screen and then said to me "She is passing".  My eyes just welled up with tears.  Tears of relief.  Tears of happiness.  Tears of thankfulness.  Praise God was one of my first thoughts! 

I continued to hold my breathe waiting for the test to finish, wondering if things could change.  She passed!  She can hear just fine!!!  Oh, I'm in tears again thinking about it.  I'm so very thankful that she has been spared this trial.  That all of us have been spared this trial.  Oh, my baby can hear!  I had told someone that I thought she seemed to hear just fine, but was told that I might have just missed the problems she was having.  I'm so thankful that isn't the case. 

The right ear was tested and as usual was fine.  After this test (OAE) she did another test to see if there was fluid in the ears and Eliana tested fine on that one too.  She gave me copies of the test results and seeing "normal" in so many places was a sweet thing!  I remember one other time when the word "normal" was a sweet thing.  It was during my level 2 ultrasound with Daniel.  I didn't want to know if there was anything wrong, but it was still a great relief to read "normal". 

We then waited for about an hour to see the ENT.  I started reading a book (Quaker Summer) which was nice treat as I don't have nearly enough time to read for pleasure.   When Eliana was awake, I read some books to her as well.  Having gotten such great news, I really didn't mind the wait.

The ENT looked in her ears and thought things looked great.  He commented that the size of her ear canals was good (it is typically smaller in children with Down syndrome which can create problems).  He also said that though he couldn't promise it, that having made it to 7.5 months with no hearing issues was a good sign that she may not have them.  We will return in 7 months for a follow-up just to be sure.

I'm so thankful for this answer to prayer.  I feel like we have been given a break.  Thank you God!

Still having problems with her feeding tube coming open - and leaking.  It happened 4 times today.  I've tried wrapping various things around it and thus far nothing has helped.  I'm hoping our ped may  have some ideas.

Time for bed.  Tomorrow is a busy day.

Thank you for your prayers.

With love,

Leslie

 

Our week - at least what I know of it

Monday - Well, we are trying to start back to school.  I'm not sure this is the best week since we have soooo many appts, but I hate to wait for a "good time" as I'm not sure when that will be.  We'll just do the best that we can.  We typically  make a big deal of our first day - and are putting that off until later in the week.  We have a breakfast out and talk about our upcoming year.  Lots of photos and fun.

Today has been ... well, so fun mixed in with not so much fun.  The children have been helpful and also whiny.  So much whining makes me grumpy.  (I know - I should deal with it better.)  Not a great start for anyone.  Part of what is frustrating me is that Eliana's button keeps coming open - and leaking all over everything!!!  She has had on 4 outfits so far today.  She's gotten a quilt, a rug, and me.  I've tried keeping it closed with a soft tube around her middle (doesn't help) and a band-aid (helps but really irritates her skin).  This has really become a problem in the last 24 hours.

Eliana has an appointment with the ENT (ear, nose & throat) doctor today.  I'm hoping that they will get a clear and accurate reading on her hearing test.  I'm also hoping that her hearing is fine.  I'd love to skip the getting tubes for now even though it is a minor surgery compared to what she  has already been through.

Tuesday - We have a visit with our ped.  I'm looking forward to talking with her about Eliana's g-tube, her feeding amounts and the problems we are having.  I'm so glad she is back!  We have a long appt time as she schedules us at the end of the morning or afternoon slot so that nobody is after us.

We will also be seeing the feeding therapist.  I've cut back on Eliana's feeding and it will be interesting to see if it has affected her weight at all.  She has had some good feedings - an ounce is now a good feed - in the last couple of days.

Wednesday - Physical therapy.  I enjoy this because it is usually a time of encouragment.  I found out last week that our PT has co-written a therapy book/assessment tool for use with children.  Wow!  I always hear how great she is - and to know that she has all of this background is even more impressive.  I'm thankful to have someone with such experience helping Eliana.

Thursday - We visit the Down syndrome clinic.  I'll be meeting with a doctor and a genetic counselor.  She is also scheduled to have bloodwork done.  May choose to do that at the ped instead.  I'm not sure.  It won't be a terribly long day since we already have an eye dr, ENT, cardiologist, physical therapist and occupational therapist.  Otherwise all of those folks could be on the list as well.

Friday - Nothing so far.  I think that is what I'm going to want for that day too - nothing!!!

I would love prayers for the following things:

*Leakage - If there is a way for the "flap" to close so that she doesn't leak so much and so often it would be great.  This only happens if the button gets opened.  It happens after a feed, before a feed and whenever it just comes open.

*Hearing - An accurate test.  I'm also praying that her hearing is fine!

*Button - I would love prayers that either it would stop opening or that we could find a way to help keep it closed.  I'm really at a loss as to what to do here. 

*All of our appts would go well.  That I would remember to ask all the questions that I have and that I would get the information that we need.

*Schooling - That this would be the start of a fun year.  We are spending some time this week making "All about Me" books.  I think it will be a lot of fun to have these as keepsakes.

Need to go as it is about time to leave for our appointment.  More as I'm able to post.

Love,

Leslie

Walking in the Rain

I've been absent from the computer for a few days.  I've gotten on here and there, but not enough to really do much.  I'll try to post a little more this week as I have pictures I want to share.  (We took a family photo yesterday that I thought would be fun to see.)  I also want to update on Rebecca's Wholehearted sales.  She is getting close to her goal - the high in the sky, unrealistic one. 

We went to church this morning.  One of only a few times that I've been with Eliana since she has been born.  The timing of services with her feedings lately just hasn't worked out.  I'm glad I went this morning though.  The pastor started out saying that he hoped that what he was going to say wasn't needed by anyone.  But that even if we didn't need it now, that we probably have in the past and definitely would again in the future.  The topic was about worship and walking with God in the midst of struggles.  Oh yes, that is where I am walking.

The part that I liked most was a video clip by Rob Bell called "Rain".  It was a beautiful word picture of God caring for us in the midst of difficulties and trials.  He talked of a time when he went for a walk with his 1yo son in a backpack.  As they started it was a beautiful day for a hike.  When they got to the halfway point and were on the return the sky began to get cloudy and soon was raining.  The rain turned into a storm and even the trees didn't provide enough shelter.  He talked about the reaction of his son.  How he became frightened and then cried and eventually screamed.  He talked of how this should be our reaction - to cry out when we are scared, hurting and in pain - to God.  There are many examples in the Bible of this.  Being weak and unable to continue is a sign of our weakness - and through this weakness, God only is shown to be strong.  Being afraid or weary isn't a sign that we aren't following Christ.  In fact, He has told us to come to Him when we are weak and heavy-laden.  It isn't IF, but when. 

I know that God showed me this awhile back as I was reading the Psalms and it comforted me.  I was reassured to hear it again today.  There are times when I feel like I'm failing if I'm sad or overwhelmed.  That somehow I don't measure up.  That perhaps my witness is weak or poor.  I've had people question me about this at times, though most of the time people seem to find comfort in knowing that in the midst of the struggle I am trying to turn to God.  It isn't always easy and often I feel like I'm not doing a very good job.  I guess that is when  any good that is seen im my life, is recognized as God - and only God.

The story of the Dad and his son continues with the Dad finally taking the boy out of the pack and holding him tightly to his chest.  They walk through the storm together with the son wrapped in his father's arms.  The dad comforts the child by whispering over and over that he loves him and is going to take care of him.  Isn't this just what God is doing for me - for you - for all of us?  He loves us so very much and wants us to be comforted while we are in His arms.  Comforted that when we cry out to God, He reaches out to hold us tightly and whisper in our ears how much He loves us.  That He is going to take care of us. 

So as I'm walking in the rain, I'm trying to listen and remember that He loves me.  He is holding me tightly.  He is going to take care of me.

More later on our week ahead - but now I need to go spend some time with my family.

With love

Leslie

Yesterday's appointments

I'm getting behind in my writing ... but I think that is just going to be the way things are for awhile.  I'm used to being on time or at least being timely.  That has been true with so many things from thank you notes to emails to other things both large and small.  For now, I'm learning to walk a little more slowly, to do what I can and let the rest go, to hand things over to people who are willing to help, to trust that people understand my heart  - that even when I dont respond it isn't because I don't care, there just aren't enough hours in the day.  (And I'm awake for many of them!)

Yesterday was a full day.  We met first with the surgeon's nurse.  She had been helpful on the phone and was in person as well.  She both answered questions and asked them.  I found that much of what I'd been told in the hospital wasn't accurate.  I wish I had known it sooner, but am thankful to have found out at all.  She told me that she was out of town dealing with a family emergency and that was why she hadn't been around to help then.  I'm just glad I asked.  I wondered if others sometimes just deal with the struggles on their own. 

The connecting tube I'd been using wasn't intended for long-term use.  It holds open a "flap" inside her button to allow the flow of formula.  The  other tubing (that lies flat) does fit!!!  It also does not hold the flap open, but instead the flow of liquid pushes the flap open.  Well, it may be that her flap is "stuck" open and there is nothing that can be done about it.  It may have been from using this connecting tube.  It may correct on it's own.  We'll just have to wait and see.

When we opened her button, a lot of liquid came out!  I was glad she was wrapped in a sheet - their sheet - so it didn't go all over both of us.  When the nurse saw this, she commented that Eliana was going to be a candidate for the mic-key.  This is a different type of button.  The downside is that it lasts 3-6 months (she said closer to 3) and the one Eliana currently has lasts a  year.  The other downside is that when it needs to be replaced, I will do it.  I guess if I've done the NG tube I can do this too.  Though I don't want to.  The upside is that when you connect the tube it "locks" into place so can't be mistakenly pulled out.

If she does need this new type of g-tube, she will not have to have another surgery.  It can be done in the offices as an out-patient procedure.  She did say that it would hurt Eliana.  It can't be done for at least 6 weeks though so no sense in worrying about it now. 

The nurse started taking off the bandages from Eliana's incision.  I commented that I was told to leave those in place for 10-14 days.  She said it was healed and could come off.  She also said I could bathe her.  (I had been told not to while she had the steri-strip bandages on.) 

Other things - she told me that the rate of flow was too fast.  (I had already taken it down and took it down even further.  She asked who my nurse had been and I told her that she had been great - so nice!  She is new though and clearly needs some training/teaching on this type of button.  I told her that the residents/fellows probably did too.  Again though these doctors were so very nice and helpful to us.

I felt encouraged by some things and not by others.  There is nothing that can be done though about mistakes but to move forward.  We went next to her feeding therapy.  She hadn't eaten in a while and I was hopeful that this would bode well.  She fell asleep going there and we let her sleep for awhile so we could talk.  We discussed her amounts (I felt that they were too much and too frequent based on how her stomach is emptying - or not).  The therapist agreed.  She recommended that I cut down her feedings for the next 5 days until we see our ped. 

She asked if I knew how to recognize signs of dehydration.  Oh yes!  I have experienced that first hand many times over my pregnancies.  I told her I saw no signs of dehydration with Eliana.  She also recommended that I talk with a nutritionist.  She thought that sometimes recommendations are made for special needs children that don't take into account their special needs.  I called today and our case manager is going to set that up for us.

So for now, I am going to work on 5-6 feedings per day.  The therapist urged me to let go of a feeding if we got behind and it meant she needed a feeding very late in the night.  This will help me to get more sleep which would be so very nice!

I've noticed some changes over the last week since Eliana's surgery.

*Rubbing her face - She was doing this a lot!  Rubbing it on my shoulder when I held her, in her crib when she was laying on her stomach and even on her hands.  She doesn't do it at all anymore.  I think it was truly the tape/tube bothering her sweet little face and it was the only thing she could do to try to get it off.  I'm so glad that she doesn't have to deal with that any longer!

*Staring at her hands - This has been something she has LOVED doing for quite a while.  She has been quite mesmerized with her hands and it has been fun to watch this.  She isn't doing that now - and I miss it.  Not sure if it is gone - or just gone for now.

*Smiles - She is smiling, but not nearly as much or as often.  Her therapist today said that the effects of surgery can last for a couple of weeks.  I had told her that I didn't think Eliana was in pain, but she also isn't quite herself yet either.

*Sounds - She is making a few new consonant sounds.  I love hearing these!  I am hopeful that her hearing has improved and that speech will not be the struggle that eating has been for her.

*Rolling - Not doing this often at all.  She was rolling a lot prior to surgery.  The first couple of time she tried this after surgery, it hurt and she cried.  She can do it now, but doesn't nearly so often.  She also was a tummy sleeper, rolling onto her tummy even if I laid her on her back.  Now at night she rolls onto her side with one leg over - as close to being as your tummy without having it touch the bed - as you can get.

We had physical therapy today too.  The therapist commented that she was developing quite well and was pleased with her progress.  She played some games with her involving memory and she did quite well.  This is always encouraging.  I love hearing positive comments on what she is learning or doing.

I need to go.  This entry feels very "factual" and I hope it isn't dry and boring.  I'll try to add more photos soon, but for nowEliana is wanting attention before her last feeding of the day.  Eating from the bottle is going ... OK, not great.  A good day so far has been 5 ounces.  Still pretty far from our goal.  We are going to keep working on it, but I think it will be a long road though and not a short fix.  A road that I never thought I'd be walking and yet here I am walking it with a little girl that has captured my heart.  I am very thankful for the many others that have been along the path to encourage us especially when it was dark and difficult.  We greatly appreciate your continued prayers!

With love,

Leslie

 

A Better Day

Oops!  I didn't realize that my post from this morning didn't show up!  I was having problems with my computer again and tried multiple times to post this.  I was in a rush to get out the door to our appts. and thought it went through.

I'll copy in this mornings which thankfully I saved when I was having troubles.  I will write more later today when I'm able about our appointments which were both good and helpful.  Here is the first post.

Thank you dear friends for your prayers. Please keep them coming. Yesterday was a much better day and I have a list of things for which I'm thankful.

*Eliana did not spit up at all! I decreased her rate of feed and her amounts. I also spread out the feedings. Not sure if one or all of these things helped, but am glad nonetheless that things stayed in. The "full tummy" still seems to be an issue though. When I try to disconnect her tubing and close her button, often the formula just seems to pour out. Not a lot of fun at all!

*I spoke with the surgeon's nurse. She helped me with the fit of the "flatter" attachment so that the line doesn't stick up from her tummy like in the photo yesterday. I thought it didn't fit and am so glad I was wrong! I'm hoping this will help it not to be grabbed and also be easier to manage. As we talked, she told me several things that were different from what I'd been told in the hospital. (Like I was using the wrong attachment!) I kept saying that this was what they had told me. She asked if I'd like to come in the following day (today) and she would help me. I of course said yes! I started to choke up and cry and she said she knew that I had hoped this would be a panacea and that it wasn't turning out that way. Yes, I just keep hoping for that "magic" fix - but there probably isn't going to be one. It is just going to take time.

*A sweet friend came over and did art lessons with my children - outside - while I napped in a quiet house. The children were thrilled with the beautiful bird houses that they painted. (I'll try to post pictures later.) It was so nice to get some more sleep. All of us were being blessed at that time! Thank you Rebecca!

*Another dear friend brought us dinner. A delicious meal with so many different things from chicken to broccoli, fruit to bread and more. It was a sweet gesture that meant a lot to all of us. Thank you Ruthie!

*Sweet notes of encouragment here and in my email box. I loved the things that ya'll have shared and the verses too. I'm sorry that I haven't been able to write each person back, but please know that each of you ministers to my heart. A lack of response is only due to lack of time - or my computer being down - not from anything else. I am deeply thankful for the body of Christ and the way that it loves on us.

That's all I can think of at the moment. A dear friend on the FIAR boards noted that this is probably much harder on ME than on Eliana. She encouraged me to do more to take care of myself. As Moms, you all know how hard that is to do sometimes. You just do what needs to be done. I think she is right though. I know that the nap and the meal were things that helped me and refreshed both my spirit and my body.

Today we have a long time out. We will be meeting with the surgeon's nurse (who is a friend of our ped) and then with the feeding therapist a couple of hours later. I'm very hopeful that both will be times of help, wisdom and encouragment.

Please pray for wisdom in feeding Eliana. Pray that I would "hear" what I need to hear in order to help Eliana. Please pray that I would know how to better care for myself so that I have plenty to give to my family. As always, pray for health and healing for our sweet girl. Lastly, pray that I would listen to God, follow Him and keep my eyes fixed on Him so that through this trial His glory is evident.

With much love and gratitude,

Leslie