Debating a trip ... and a fun photo of 3 of my boys!

I've been pondering a lot about whether Eliana and I can make a trip - to Richmond for the VA homeschool conference.  Some dear friends are going to be there and I would love to see them.  The difficulty of travelling with Eliana though is no small thing.  I've been weighing out the benefits of being there with the stressors of going. 

One of the holdbacks is a room.  There isn't one available at the adjacent hotel and I'm not sure I can pull it off without being that close.  With all of Eliana's equipment it would just be tough.  I have a sweet friend that would be going with me or I wouldn't consider it at all.

Roger is checking one last time to see if there is a room - and if not we will probably not be going.  I've just been praying that God would work out the details if we are to go - and give me a peace about whatever the decision turns out to be.

Just for fun - here is another picture.  My boys love to dress up - usually as pirates or cowboys.  This moment made me chuckle and I thought some of ya'll might enjoy it too.  The boys are 2yo, 5yo and 7yo.





Love,

Leslie

Trying to get back into the swing of things

Finding that new normal.  It's something I've talked about - and had others talk about it too.  I know that things are going to be different.  There are some parts of change that you expect with a new person added to your family.  Eliana however has brought many more changes than we ever anticipated.  There are many things I need to learn or relearn in a new way.  I need new routines for managing my home and family.  I need to get organized!  (Something I really enjoy doing, but honestly just haven't had the energy to do yet.)  I sometimes wonder why I'm not able to get more done.  I wonder if I'm lazy.  I think I should be able to handle what is on my plate now, but the reality is that it is going to just take awhile - for all of us. 

While we are struggling with something as big as feeding, it's going to be hard to have things seem "normal".  i sometimes wonder if I'll ever think things are normal again.  I do have glimpses of it though.  Times when the children are all playing - and including Eliana in their play.  Tonight having the children (4 of them - the unhelpful one shall remain nameless) help with cleaning the wood floors just turned into a time of chaotic fun.  (I loved watching our 2yo help - and his excitement of being a part of it all.)  He also helped calm Eliana when she was fussy tonight in her swing just by being there and talking to her.  It was sweet.  Eliana is so very social and often if she gets upset, she just wants someone to talk to her. 

As I try to figure out how things need to be managed, I am thankful to be on this side of surgery.  Things are much better now.  The time before surgery was just hard - painful - heavy.  It's hard to even explain the overwhelming nature of all that I felt during those months.  Walking through times of "crisis" is difficult and while we are on the other side of that difficulty, I know we have other trials to work through as well.  Thankfull though we also have times of joy!  Eliana is just a delight.  She has the sweetest laugh, a smile that could melt an iceburg and the cutest little face.  (Yes, I know I'm biased.) 

There are many families facing surgery now or just recently been through it on a Downs Heart loop that I'm on.  It is exciting to hear of each new child that successfully  makes it through the surgery.  Sometimes when I reflect on Eliana's medical issues, I think that had she been born in a different time, she would not be here.  It isn't just the heart, but the fact that going into heart failure made her unable to eat.  I'm so very thankful that we didn't have to walk that road.  I'm thankful for the many medical advisors and doctors we have had to care for our sweet daughter.  I'm thankful for the work God has done in her - and also the work He is doing in me. 

I'm praying that through all of this that God would give me peace, wisdom, patience and a heart filled with love.  I know that some of the requests I've made have not been answered as I would have liked.  I know also that many of them have - and even sweeter are the times I've been given a answer to something I had not yet asked for.  God is good.  He is faithful.  He is my strong tower. 

Eliana's feeding is not improving.  At times she seems to do better after some oral exercises, but not enough.  In fact, her feedings seem to be getting worse.  One of my friends commented that it was hard to believe she had feeding issues when she was so pudgy.  It's just due to the feeding tube though.  Today she ate 2.5 oz by the bottle (12:30am - 9pm).  At the 12:30am feeding just now, she did take 2 ounces which is much better than she has done recently.  I am still hopeful, though also trying to be realistic that there may not be an easy fix for our sweet girl.

Thursday morning, I will be meeting again with the feeding therapist.  (#4 from the list below)  I'm looking forward to hearing what she has to say.  Later that afternoon we'll see the physical therapist.  I think Eliana is doing well with her  physical skills.  She is quick at rolling and enjoys doing it. 

I am hoping to post some updates on Rebecca's wholehearted bracelets soon.  She has taken the last month off to work on finishing up some of her badge work for our Keepers of the Faith club.  She has been diligent to finish up her badges.  Just today she started beading again.  We have some outstanding orders and hope to get to those soon!  I'm also planning to post some photos of her bracelets here for those that would like to see them.

Please keep us in your prayers. 

With love,

Leslie

Just a sweet picture!

I love this photo of our little cutie pie!  She loves rolling over and is working hard to build up strength in holding her head up.  She also loves to stare at her hands - her left  had in particular.  She often holds it up in the air while gazing intently at the marvelous hand she controls.  It is really cute!  

Feeding update

I received a phone call yesterday morning from the pediatrician's office.  She had the therapist on the line and wanted me on too so that we could get an appointment in asap.  She asked if I'd be available at 12:30 and I said YES.  I was happy to have someone to see that would hopefully give me more information on our options and ideas on the need for a G-tube.  I know that I've mentioned before that the NG tube (the one Eliana has that goes from her nose down to her stomach) is not a good long-term option.  We had initially considered the G-tube, but the cardiologist didn't think we had time.  He wanted at least 6 weeks in between surgeries and didn't think we had that much time until her heart needed to be repaired.  Thankfully we did have more time for her to grow and get stronger, but also more time for the tube.  It's been almost 4 months now.  I don't think it can stay too much longer.  (Maybe another month?)

I think I might have been confusing in one of my posts about feeding therapists.  It's not surprising since to date, I've seen at least 5.  Someone joked that by the time we're done I may have seen all of them in our area.  She may be right.  Here's a run-down of the folks I've seen and the order in which I've seen them.

1.  Pediatric OT (occupational therapist) in the hospital.  She was wonderful and very helpful, but only sees children that are "in-patient".  We saw her in Feb when the NG tube was placed and again after heart surgery.  I've talked with her some on the phone since, but can't see her. 

2.  Speech or OT (can't remember) that was out-patient with the hospital.  Also helpful and works on the same floor as all of our cardiac appointments.  Our goal though was to find someone to come to my home as that is most helpful and also easier for me! 

3.  Physical therapist/feeding that came to my home.  Very nice gal, though some of her suggestions haven't felt right to my mommy heart - and I told her that.  Most feeding therapists have a speech or occupational background.  This gal has many, many years experience working in the NICU helping get babies to eat.  She has continued to come to my home while I was also scheduled to see an OT for more feeding help given Eliana's problems.

4.  Occupational therapist (OT) that sees a friend's child at a facility near the hospital.  Really liked her, but her schedule was so booked that after seeing her last week, I couldnt get another appointment for 3 weeks.  Really too long to wait given Eliana's current condition.

5.  Second feeding therapist at the same facility as above.  She worked us in yesterday at the urging of Eliana's ped.  Also nice and helpful.

Eliana, Daniel and I left for the appointment around noon.  (My other children were in the co-op camp at the time.)  Daniel wanted to go with me and was good during the appointment.  I think at some point he will also need to be seen by someone there as he has some feeding issues too.  (Very picky on a not normal scale.)  The therapist helped with some ideas on getting him started too which was nice as she also thought he could be helped with some therapy based on things I shared and some that she observed.  She was very nice about him being there and playing in the room and interacting with him too.

One of the first things she commented on was the placement of Eliana's feeding tube.  Quite unusual to say the least.  She even took a picture of it!  She said that if it's working, not to change it and it is working thus far - she has not pulled it out since it was placed this way.  (She does try if awake during a tube feeding so needs to really be watched then.)  It's been 2 days so far!  (Who would imagine that it would seem like a long stretch to go 2 days!) 

We tried feeding, various oral stimulation exercises, different ways to hold her during feeding, etc.  All in all she took close to 2 ounces (which is pretty good for her) in about 40 minutes.  Still too little and too long.  The therapist commented that she was working pretty hard and not very effectively.  She also agreed that it didn't appear to be a hunger-driven problem confirmed by the times I've left the tube out and seen no improvment.

The therapist said that she does think Eliana will need a G-tube.  She didn't see any reason to believe that things would improve quickly enough to avoid it.  She shared that she had an NG tube for 10 days once and that it changed her nose.    She said that it hasn't been the same since and that she has problems with sinus infections on that side now too.  Oh, I hate thinking that she'll have long-term issues with her tiny nose due to this!  I know that the size of her nose (really small compared to others her age) will likely be problematic and to think that it may be increased, well, I'll pray that it's not!

The therapist also commented on her skin.  I told her that it actually looked better.  She thought it was a problem and even commented that her skin was "fragile" all over her body.  She said that if she did get a Gtube that her skin might also be a problem around that site.  Guess this will have to be a strong prayer request too! 

She also said that there was a cancellation with therapist #4 and she pencilled me in for a time next week!  So thankful for that kindness!  And the appointment time is very close to her normal feeding time which is also a blessing!  I hadn't asked for this but it was so kind of God to provide it for us!

I left the appointment with the confirmation that what I thought was going to happen, will most likely be occuring soon.  Another surgery for my little girl.  Just the thought makes tears well up in my eyes.  I know that it isn't as "serious" as heart surgery, but any surgery is serious.  Another hospital stay.  I don't know any details yet on the surgery at all.  We have an appointment with the cardiologist on the 11th and will likely find out more then.  Guess I should probably start doing some research.  (This isn't my strong suit and I've been most blessed by several friends that have done this for me at various times.) 

We also left with some oral motor exercises to do with Eliana which she likes or at least doesn't mind.  She is pretty easy-going though and doesn't mind a whole lot.  She really is a sweetheart!

I have an adorable picture of her taken today.  I'll try to have one of my guys upload it so ya'll can see it soon.

Please keep praying for feeding issues, wisdom on the decision about surgery and Eliana's heath.  Oh, and a small prayer for my hand.  I burned it tonight while helping Rebecca cook something for her Sunday School class tomorrow.  (She was making breakfast pizzas by cooking them in the pan then placing the pan in the oven to broil for 3 minutes.  After taking the pan out of the oven, I set it on the stove.  A few moments later I grabbed the handle - and burned my hand.  It isn't bad - but it does "burn".) 

I'm far behind on answering notes, emails and phone calls.  Please know that I treasure each one and am very thankful for all of you!  God is good!

With love,

Leslie

On being "emotional"

I'm surrounded by boys at almost every turn (and thankful for each one of them and my girls too!).  My sweet boys don't always appreciate or even understand "emotion".  This is often pointed out by my 14yo son as something that just "isn't logical".  It hasn't been a trait that I would have used to describe myself - until 6 months ago.  I probably shouldn't be blogging now as I'm feeling emotional and overwhelmed right now.  I honestly do pretty well a lot of the time, but there are times when I feel so discouraged.

The future used to be all hopes and dreams.  I knew that there would come hard times, but I didn't know what they looked like.  Now, I can see some of them - or perhaps I think I can.  I see my friends struggling with their own special blessings and I long for the simplicity of my life.  I wish my sweet little girl didn't have to struggle so very much to do even the most basic of things - like eating.  I wonder if it's all going to be a struggle.  I really shouldn't be writing now, should I?  It sounds depressing even to me. 

I talked with Eliana's pediatrician today about all that has been going on with her feeding.  She agrees that hunger doesn't appear to be what is driving her and that there is something oral motor going on.  She too is questioning if the G-tube is something to consider now.  I told her that while I would do whatever I could to prevent Eliana from having to undergo another surgery, that I was feeling resigned to the fact that this was probably inevitable. 

We just aren't seeing improvement at all.  I've tried various bottles and nipples.  I've tried sensory exercises.  I've tried not tube feeding to see if it improved her ability to eat - and it doesn't!  She has pulled her tube out so very many times this week that I've tried leaving it out in order for her face to heal.  Yesterday she pulled her tube after her 6am feeding.  I put it in about 9:30 or 9:45pm.  During that time she ate less than 6 ounces and should have had 16oz.  Did I say this already in another post?  Sorry if I'm repeating myself. 

The pediatrician is calling another feeding specialist at Duke tomorrow and asking for an emergency meeting with Eliana and I.  She wants her to help assess whether we need a Gtube.  She has specialty in cardiac babies.  I am hoping she can help.  I'm also afraid to hope - afraid that it will be more of the unknown.  I feel like I'm being asked to make decisions while given conflicting information and nothing is concrete.  It's so hard to know what to do.  Roger isn't able to help because he knows less about all of this than I do.  (He doesn't have the benefit of meeting with people/specialists or reading articles or having people talk/share their experiences.)  I am so very thankful for the many people that are reaching out to share ideas, articles, stories and more with me!  Truly I am thankful.

The ped hopes that the specialist will be able to offer some insight.  She said that it couldn't hurt to get another opinion.  I agree.  It's hard for me to be the "expert" on Eliana sometimes as I feel like there is so much I don't know.

On a different subject this has been a really fun week for my children.  They have been participating in a co-operative camp with a group of friends.  They are learning and having a blast!  They are so excited to face each day and I'm so glad that they are having these experiences.  This last 5.5 months has been different and difficult for our whole family and it's nice to have a little bit of "normal" back into our lives.  We are hosting the camp at home (my house and Catherine's house) which makes it easier for me to participate.  It's really the only way we can participate due to the feeding issues. 

Catherine and I taught today and it was so much fun.  We had 12 children ages 4-9 and they are delightful!  We had two sweet friends here helping with our younger children - and Eliana decided to nap through most of the morning.  We learned about birds, read stories, made a bird bath, ate "nests" (rice krispy treats with goodies inside) and gathered materials and made nests.  We have taught this camp before - 5 years ago to their older siblings - so planning it was a breeze.  It's our 10th year of teaching camp together.  It's one of those "last things" that are hard for us right now as their time here is winding down.  Please pray for my sweet friend as she has much on her plate right now!

I'm going to close as I'm not sure I have much to add that would be encouraging.  As I sit here and think with tears rolling down my cheeks.  Please continue to pray.  Thank you for being faithful.

With love,

Leslie

PS  I need to add something encouraging.  Tonight as I was sitting and holding Eliana in my lap, she just started laughing.  I wasn't paying attention to her at the time and am not sure what she found humorous, but something tickled her.  She just laughed and laughed.  She has the sweetest smile and laugh.  I think she is just precious and despite all of the trials, I am so glad that she is part of our family!

As I was reading the Bible this morning and thinking about birds, I read Psalm 8.  It's a beautiful chapter about God's power and majesty.  Verse 2 mentioned something that I was surprised to see this morning - a reference to our struggles (Eliana's mouth/eating).

"From the mouth of infants and nursing babes Thou hast established strength, because of Thine adversaries, to make the enemy and the revengeful cease."  Ps 8:2

I'm not sure exactly what God wanted me to get from this - but just the fact that He is aware of my/our struggles and cares.  Even to the smallest detail of my life.  Is God going to use this struggle to establish strength?  I hope so.  I know that He can.  He alone can.  I praise you Lord for your name is majestic in all the earth!

I'm up to 30 times now!

I remember when I posted one of my "numbers" posts and the number of times I had put in the NG tube was 4.  I thought that was a lot.  It was at that time.  If I'd known then that the number would rise so much more, I'm sure it would have been overwhelming.  It has gotten easier - but it still isn't easy.  So very often now it gets caught on her gag reflex.  I sometimes wonder if it's swollen or irritated?  Especially over this last week with having to replace the tube so many times.

Some of you that are into numbers may remember my last post when I stated that I was up to 27 times.  Yes, it's been 3 more times since then.  She has pulled it out every day this week and one day 3 times.  *sigh*  Some times I just want to cry when I see that tube in her cute little hand. 

Today - like another day this week - one of my children peeks into her crib and then comes to tell me that she has pulled out her tube.  I've been leaving it out for longer chunks of time in order to try and let her face heal.  It's looking better - no more blistering though it is still red and the skin is rough.  Still putting creams on it.  During the time that it is out, I'm still trying to feed her by bottle. 

So this morning when I see that the tube is out for the 5th time, I decide to call the cardiologist and the pediatrician to ask for advice.  I leave a message for the ped and then phone the cardiologist.  He gives me two options.  The first is to put mittens on her hands so she can't grab it.  I'm not thinking she would like that, but can see how it could be effective. 

Here is the second option.





Can you see that the tube is going up her nose and is taped to her forehead?  It was hard getting this tube in.  It was just stuck on her gag reflex.  She started to cry and I had to just gently keep trying and trying until it finally went down.  Poor little girl was just sobbing by then and it was really hard to get it taped into place!  There just isn't much room around her nose at all!  I just held her and cried.  I know I have to do this, but it's still just hard some days. 

Catherine helped to tape it down and then put her bow over the tube to hold it in her hair.  We thought this might help her not be able to get to it.  I offered her the bottle after the tube was in.  She had been without the tube since 8am.  Over those 14 hours she ate less than 6 ounces.  She should have had 20oz.  One of the feeding therapists came by today and couldn't get her to eat much at all - and she tried for over an hour.  She wants me to try a couple of days of no tube feeds except at night to stimulate her hunger.  I just don't think that is it however.  I can tell when she is hungry and there are times when even that doesn't help her to eat.  There is just something else going on.

I wish I knew what it was - but I don't.  I guess I'm in good company because none of the professionals that I'm seeing can figure it out either.  Though they are trying.  I'm thankful for my friend Catherine who is also reading and researching trying to help find answers, suggestions, anything that might help.  This part of the journey can feel lonely and overwhelming.  I'm expected to help my baby and make decisions and I just don't know what to do.  There just isn't an answer - or at least not an obvious one right now.  I shared with our case manager (helps to coordinate Eliana's therapies) that it's hard to know what to do when the "experts" are telling me different and sometimes conflicting things to do.  She affirmed that I'm also an expert - on my daughter.  It was sweet to hear that reminder. 

Back to the cardiologist.  I asked her what was the timeline for the G-tube, meaning how long could we go until it was the only option remaining.  He thought we still have more time.  If we decide that is the next option he said it could be done within a week of scheduling.  Our next appt with him is in a week and a half.

Our ped wasn't in today, but I'm sure will call back tomorrow.  I talked with one of the nurses there and she was very nice but not able to give me answers either.  She offered to have us see a different doctor, but I'd rather wait and see the one that knows Eliana and has seen her LOTS.

Here's where we are with feeding right now.  We are hoping to see something that will make an improvement.  I've been trying some sensory input (kind of like a deep massage on her arms, legs and back with a soft brush).  While she doesn't mind it, I'm not seeing any change.

Next, I can ask the ped for a prescription for Zantac.  This would help if she is having any reflux.  If she is then it is silent.  I don't really see symptoms.  This would be an easy answer though.  Something that is easy to "fix".  I'll probably try to start that in a couple of days.  We are trying to space out the new things that we try so that if there is a change, we can know what to attribute it to.  After that, I'm not sure.

I'm not scheduled to see that new feeding therapist for another 2 weeks.  It's really too long, but she is on vacation this week and was full the following week.  *sigh*  I really wish she could be seen more than once per week.  This was suggested to me by an OT in the hospital and at the time I didn't get it.  I do now though.

Oh, I forgot to mention that while watching her during her 10pm feeding (just after getting the new tube), I saw her reach up and grab hold of the tube at least 4 times.  *sigh*  I was hoping she wouldn't be able to reach/grab it off of her forehead, but clearly she can.  Time will tell if she leaves this one in any longer.

It's late and I should go to bed.  The children are in "camp" this week.  It's a cooperative camp that includes 10 families.  We split up the teaching resposibilities and share the work.  It's a lot of fun for everyone.  The older kids are off-site for the first time doing things like geocaching, canoeing, biking and a ranger program at a local river.  The younger children are enjoying a "Fun with Nature" theme.  Catherine and I are teaching tomorrow on birds.  We did this same topic 5 years ago with the older kids so the planning was very easy.  We are looking forward to a fun time.

Please continue to pray for Eliana's feeding.  Here are some specifics.

• Improvement in the volume she is able to consume by bottle


• Wisdom in finding out if there is a problem and identifying it.


• Wisdom in knowing the best course of action to take.


• Strength and peace to go with a plan or to say no if it just doesn't seem right for Eliana


• Appointments with the OT/feeding therapist sooner rather than having to wait.


• That her feeding tube would stay put for many days!!!


• Wisdom in knowing if she needs a G-tube and peace if she does


• Health for our little girl

That's all as it is late and I'm very tired.  Morning always comes too soon for me. 

With love,

Leslie

Going for a record!

And not the type I want to brag about either!  Eliana has had a time today pulling out her feeding tube!  I don't think it's intentional, but she is still fast about pulling once she has grabbed onto it.

Here's what our day looked like.

6am - Tube feeding

8am - Joshua walks by Eliana's crib then wakes me to tell me that her feeding tube is out.  I walk over and she is  happy to see me.  She smiles a delightfully big grin while holding on to the feeding tube in her left hand.  She has pulled it out completely.

I decide to leave the tube out to let her face heal for a while.  Eliana lays beside me and falls asleep.  She wakes about 9:45.

10am - Eliana eats about 1.5 oz from the bottle and is not interested in any more.

noon - Time for a regular feeding, but Eliana has just fallen asleep.  I decide to let her sleep since her last feeding was a little late. 

2pm - She starts to wake and I debate again about whether or not to try the tube.  I decide to try out the sensory exercises on her.  She doesn't mind them.  We'll see if they make a difference for her.  Since she has had a good nap and is alert I decide to wait again on the tube and try the bottle.

3pm - Eliana takes a bottle on and off.  She takes in 3 oz.  This is a good amount, but it has really taken far too long to get it in as it will burn more calories than she should.

4pm - Still awake so we try more sensory exercises.

6pm - Put the tube back in.  Try the bottle but she isn't interested.  Start her tube feeding. 

6:12pm - She pulls her tube during her feeding!  Fortunately I am right there and see it and can stop the pump.  If she pulls it out while it is running it can go into her lungs.  We really don't want her to aspirate any formula.  She doesn't get the tube all the way out.  Since she has only  taken in a small amount (24cc - less than 1 oz) I decide to just put it back in.  She has gotten the tape all in a wad so that it won't work.  I'm thankful to hear a friend stick her head in the door just at that moment.  She comes up and helps hold Eliana while I remove the old adhesive and put on some new.  Then we start the feed again.

I stay with Eliana to keep an eye on her.  When she has almost finished her feed, I go to get some water to use to flush out her tubing at the end of the feed.  During the 10 seconds that I'm gone - she pulls out the tube again!!!  This is the 3rd time today.  Since she has a full stomach I know that I can't push it back in so I pull the rest of it out.

8:15pm She is worn out and falls asleep for an hour.

9:15pm Eliana wakes up.  We do the sensory exercises.  Take a bath.  Reinsert the tube.  She is definitely awake and stimulated at this point.  I try again with a bottle.  She is eager and ready to eat - but not very effective at getting much in.  We try on and off for about 30 minutes or more.  She takes in 2 oz then gets the rest in a tube feed.

So, I've reinserted the tube 27 times now.  That doesn't count the many times that it has come partially out and I've just stuck it back down.  I'm down to 8 tubes now and wondering if it's time to order more.  I'm still confused about the feeding.  She wants to eat, has the stamina, has a good suck, but something is wrong.  Please join us in praying for wisdom in figuring out what is wrong.  I know that if this isn't resolved that we are looking at another surgery for a G-tube.  That really isn't the route that I want to take with her!

As I'm confused and wanting answers, I also find a peace in knowing that we will figure this out at some point.  I know that God has a plan for our lives and that He loves us.  I don't  understand much of the trial that we have walked through, but know that because my God is good that He will use this for good.

I was blessed by a note from a dear friend today with a Bible verse that really ministered to my heart.  I wanted to share it here too.

2 Chron 20:12-17 For we have no power to face
this..... We do not know what to do, but our eyes are
upon You. ... This is what the Lord says to you: 'Do
not be afraid or discouraged because of this ... Go
out to face them tomorrow, and the Lord will be with
you.'"

In this case, it was Jehoshaphat facing a vast army,
but for all of us, it's the trials of life.

v.17 Take up your positions, stand firm and see the
deliverance the Lord will give you, Roger and Leslie.

I'm trying to keep my eyes on you God.  Some days it is just hard as I'm overwhelmed by the things that I need to do and keep up with for my little girl.  I'm so thankful that she is healthy and happy.  Her smile just melts my heart.  She is a precious blessing and I'm so very thankful for our Eliana Joy!

With love,

Leslie                                                                                                                                                                                                            

We're home from the Conference

Whew!  It's good to be home.  I'm not always sure why it is soooo tiring to work at a conference, but it is!  I'm sure it doesn't help that I have to work around a feeding schedule instead of going to sleep, but I'm not complaining!  It is good to be home though!

I prayed before going to the conference that God would use my time there as He wanted.  That my words would be encouraging to someone, that I might help bless someone if they were struggling or overwhelmed and that I might be of help to someone that needed it.  What I didn't ask for was to be blessed in return.  Isn't God good to have done that for me?!

I had asked for prayers for Eliana and she did great!  She is such a sweet little girl who just loves people!  She loves to smile, laugh and talk with people.  If given the choice of playing with a toy - any toy or looking at a person, she will choose the person every time.  I love how social and interactive she is with people.

She did not eat well with her bottle however.  I'm not sure if she was distracted or overstimulated or something else?  She had one night when we were back in the room when she was clearly hungry, trying to eat, but kept pulling away from the bottle.  I'm not sure if she was hurting???  It's clear that "something" was wrong.  It's so hard when you can't just "fix" things for your children.  I'm sure that is something that all of us can understand and relate to. 

We kept Eliana with us at the booth most of the time.  We brought her feeding pump and set it up there as well.  It definitely drew attention!  I had people come over to talk with me that had also experienced having a child on a feeding pump and one that was getting ready to go on one.  Funny the "clubs" we never want to belong to and yet find comfort from others that have journeyed on that same path.

I also met several Moms of children with Down syndrome.  These moms were very encouraging to talk to as they shared their stories of the blessing of their special child.  It does help to hear that it isn't the "doom" that you often hear about and that there is much joy instead.  It doesn't mean it isn't hard, but that there are many rewards as well.  I also met a Mom that is newly on the journey too with an 8mo old.  She lives fairly close to me and is planning to use the same curriculum.  I'm hoping she will join our local FIAR homeschool group.

I talked with a number of people this week-end about FIAR (Five in a Row - our curriculum that I was selling) and homeschooling in general.  I remember how overwhelming it was starting out and how blessed I felt at finding FIAR at the beginning of our schooling.  It is a very gentle, relational and fun way to school.  It  has been a great fit for our family.  I think it will be wonderful for Eliana when she is ready for it too.  I am humbled that God continues to use my words to encourage others.  I am thankful that He is able to use me as confirmed by people telling me that my words were a blessing to them.  Isn't He good to use each of us to minister to others?!  I love being a part of the body of Christ!

I was also blessed to see a sweet friend that I only see once a year or so.  We hadn't seen each other for a year and caught up quickly.  She is a mom of 6 as well and has been diagnosed with stomach cancer.  She is undergoing tests.  Please pray for Dee Dee.  She is a godly woman that loves the Lord and is praising Him in the midst of this trial.  Her dh has started a blog about their journey.  I'll come back and post it later.

Please also pray for another dear friend Maggi.  She has been in the hospital for 5 weeks now.  She was rushed in one day when her body was undergoing organ failure.  It was thought to be meningitis but I'm not sure if this was confirmed.  For a while it didn't look as though she would make it.  Thankfully, she is recovering though she has also lost her legs below the knees.  She is still in the hospital undergoing therapy and has a long road ahead of her.  Through all of this, she and her dh have praised God for His goodness.  I know that they would love your prayers as well.

I'll have to type more later and try to post some new photos as well.  It's late and although I was able to catch up on some missed sleep today, I'm still tired.  One last praise.  My children at home had fun with their grandparents.  I'm so glad that they had this time together.  We were sad to see them leave this morning and look forward to their next visit!

With love,

Leslie

PS  Thank you for your prayers!!!  God has been so good to answer them.  Eliana's face is improving.  It is still red and dry/peeling.  It looked much better over the last couple of days - MUCH!!!  We were able to keep her tube in for 5 days!!!  I think that must be a record since her surgery.  She tried to pull it out many, many times - but we were able to catch it before it was pulled out.  I also retaped her tube several times and this seemed to help too. 

Tonight putting in the tube was one of the best times yet!  It was a fairly quick one and she only cried for a short time.  Thank you God!

Needing to pack ... and putting it off until the last minute as usual.

I know that I waited until the last moment before Eliana's surgery.  I even did this before her birth.  In fact, I had packed NOTHING - and because I was so very sick and had to be admitted to the hospital right away, there was no time to pack anything.  (In the past I've always just packed when I was in labor.) 

Tomorrow we will be leaving to attend the NCHE conference.  It's our state's homeschool conference and I'm a vendor there.  I sell the FIAR curriculum - which I love - and is written by dear friends of mine.  I've been doing this for a number of years and have loved sharing with others the joys we have experienced using this curriculum.  For several reasons, this will be my last year as a vendor which makes me sad.  Perhaps if the market changes, I will do it again one day - we'll see.

This will be Eliana's first trip.  It will be her first significant outing that isn't medically related as well.  We've missed a lot of field trips and travel that I had anticipated going on and I'm looking forward to getting out with my sweet girl.  A little nervous about it too.

There is sooooo much stuff to pack for Eliana!  It's amazing how one so little can require so much stuff.  I have the feeding pump, additional feeding bags, syringes, stethoscope, formula (both ready to feed and  powdered to add in), bottles, dish soap, drying rack, bottle brush, NG tubes, scissors, various adhesives (duoderm, tegaderm, pink tape), diapers, wipes, blankets, clothes, socks, pjs, swing, stroller, etc...  Maybe you can see why I'm putting it off.  LOL

Today we visited a new therapist - an OT with feeding experience.  She was very nice.  She watched Eliana eat.  She noticed that there seemed to be some problem - something that is bothering her.  What she doesn't know is what has caused it.  It could be something sensory caused by all of the cardiac issues, could be silent reflux, or it could be fatigue.  A lot of things to look at and try to sort out.  We are going to try to take each one step by step and see if we can rule things out.  She told me that if we tried one and didn't see a difference in a week or less, we could move on to the next thing. 

Eliana didn't eat well.  She tried and then got fussy.  The therapist tried some different things to soothe her like a vibrating chair.  She finally got really fussy and stuck out her lip several times and then just cried.  Really not something she does often at all!  I tried feeding her again and she was clearly hungry, but for some reason couldn't eat.  I then tube fed her some of the formula which settled her right down and made her happy again.  That was what made the therapist think that reflux/sore throat could be the problem. 

She also said that based on her experience she did not think it was a good idea to go without the tube feedings.  She thought if we could see an increase in the amount that she is taking that perhaps we could move to that at some point.  My instincts tell me that this is the way to go as well.  She's gone as much as 12 hours with no tube feeding and didn't indicate much hunger at all.  She also takes only about 6 ounces per day by the bottle.  That's less that 25% of her total.  I know that she is a healthy size and could afford to lose some weight, but I don't want a lack of food to affect her ability to grow and develop in other areas.  *sigh* 

It's hard to know sometimes what is right.  I know that God will give us wisdom though as to what to do for Eliana.  That doesn't mean we won't make mistakes - we'll make plenty of them!  We will do the best we can to follow God's lead on what course to take for Eliana.

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.  James 1:5

This is one of the verses I've been praying as we seek to find what will work best for Eliana.  Honestly, it's hard to know.  I'm trusting God to lead us on this.  Trying to find the path He wants tme to walk.

The therapist today was encouraging in terms of what I'm trying to do with Eliana as well as commenting on her motor skills.  It's always nice to hear words of hope.  I think that so often when you hear about a child with a disability you tend to hear the "gloom and doom" instead of the hope.  I know that God made Eliana and blessed our family with her and yet words of hope for how she will fare in this world are still nice to hear.

A few prayer requests for our family.

1.  Safety as we travel to the conference.  Health for all of our family, most especially Eliana.

2.  Peace at home while we are gone.  My parents are here to help with the children and I'm hoping that it will be a fun time for all of them.

3.  My daughter Rebecca has a hard time being away from me for lengths of time.  There have been a number of those over the last 5 months and her heart is just tender.  (That is  often a great thing but can cause hurt at other times too.)

That's all for now.  God bless you faithful friends!

With love,

Leslie

Tuesday's happenings

Not feeling creative with the titles, but wanting to update on what is going on.  I'm not sure where my day has gone, though having a medical appointment always seems to take up so much of the day!  (Getting ready for it, driving, time waiting, time in the appt, etc.) 

Eliana pulled out her feeding tube this morning close to the end of her 6am feed.  Thankfully we were both awake (courtesy of the 2yo and 5yo) and heard it so that she didn't have it potentially running into her lungs!  (Never thought being woken up by my little boys would be an answer to prayer for Eliana's safety!)  Her skin where she pulled out the tube looks awful!  It's crusty and so very red.  It looks like it did just before her surgery.  She was looking a little better just after surgery, but it's getting bad again now.  I decide to leave off the bandages as long as possible to let her skin have more time to try and heal.  We are using duoderm and tegaderm and haven't found any other good options.  I have been using aquafor to moisturize her skin, but it doesn't help when the bandage is just ripped off of her face.

We had a visit to Eliana's pediatrician today.  She has continued to gain weight.  She is up to 13 lb. 13 oz and is 24 5/8" in length.  She has literally jumped on the growth chart since her surgery.  Her doctor plots her growth on 2 charts - one that is used for most children and a second that is used for children with Down syndrome.  On the DS chart Eliana is close to the 70-75% in both height and weight.  She does have a few rolls which are quite cute!

Face - Dr L is concerned that the skin on her face may become infected.  She prescribes a cream to put on her face (Bactraban) to help it not get infected.  She also mentions that she is concerned that we will end up needing a G-tube due to her face if it doesn't clear up.  She want us to be able to avoid that if at all possible. 

Part of me is feeling resigned to the fact that Eliana may need another surgery.  I don't want it - but I don't see things improving like they need to be and the NG tube is not a long term option.  I'll do all that I can to try to prevent it, but know that it isn't in my control.

Dr. L said it was fine for us to go to the conference as long as people weren't in her face.  I told her that there were probably some people that would want to be in her face and she just told me that I needed to make sure that they were healthy.  :-)

On the ride home I was praying and thinking about how much the support I've received from people has meant to me over the last 5+ months.  I can not even begin to explain how your notes, calls, acts of service and more have ministered to my heart!!!  I have felt so very loved even as my heart was broken.  I know that God was telling me that all of this support was His way of showing love to me too.   I have always been thankful for my wonderful network of family and friends.  I have been additionally blessed in that He placed new friends in my path that have been an amazing source of encouragment, love and wisdom too  - several having walked this path before me.  I am so very thankful to be a part of the body of Christ.  I'm so thankful to have an active support system both in real life and also here on-line.  It would have been a much harder, darker road without all of that support. 

I was listening to a song today that talked about how you had to walk through the valley to climb up to the mountain of God.  I've always looked at others and marvelled at their faith when they walked through trials.  I wanted that faith - but I really didn't want to go through the trials!  Well, this trial has been hard and has felt long.  I know that it isn't over, but it is getting better.  I'm not sure how I've changed, but continue asking God to do something in me - make me more like Him - anything but leaving me unchanged.

I have received phone calls from the outpatient speech/feeding person at Duke wanting to see if I wanted a follow-up.  I have also been trying to work something out with a friend's (hi Catherine) therapist who is experienced in this area.  I was hoping to find an option that was covered by our Early Intervention so that it wasn't $50 a visit with co-pay/parking (and that is WITH insurance). 

Today I received a phone call from that gal I tried to schedule with last week (earliest appt was end of June).  She talked with me on the phone, asking questions to try and see if she could help via phone.  I explained as much as I could and she explained that she was just booked.  Towards the end of the conversation though she agreed to meet me tomorrow!  I'm so very thankful for this!  I will update on this as I can tomorrow. 

If you are praying for us, please continue to pray for Eliana's feeding.  Nothing today that remotely came close to yesterday's grand numbers.  She ate a little over 6 ounces orally today.  A long way to get up to 28 oz.  Our ped said we could go lower if I wanted to try to do more oral feeds and less by tube.  At this point I'm not going to do that as I don't see that it really helps her.  I did not tube feed for 3 of her feeds today and she only took in 4 oz total in those three feeds.  Yesterday was a sweet spot - and one I look forward and hope becomes the norm.

Also pray for healing for her skin.  Perhaps also that she would leave her tube in for longer periods of time.  I've put in a new tube 25 times now.  Tonight was hard as it just kept getting "caught" on her gag reflex.  It did go in though.

She's finishing up her last feeding for the night and it will be time for bed soon.  My parents are coming here tomorrow and we are looking forward to seeing them! 

Thank you for your notes, your prayers and your friendship!  I truly thank God for each one of you!

With love,

Leslie