Note from our pediatrician

I received a note from Eliana's pediatrician today.  Have I mentioned lately how much I appreciate her and the attention she gives to Eliana.  I am so thankful to have a doctor that knows her - and cares about her and is willing to care for her during her off hours.  She has been a real blessing!  We met her at the hospital after Eliana was born as the doctor doing rounds.  The NICU doctor connected us with her as someone that would be very helpful.  She was so much more attentive and helpful to us than our regular ped during this time.  (He didn't have time to stop to talk to me, just peek in my room and say hi.)  We decided right then to switch practices and haven't regretted it for a minute!  I thank God for placing her in our lives. 

Here's most of her note to me.  I've edited and removed all names.   

Just had a nice conversation with Dr. C. He and I agree that if the OT's think they can make significant improvements in her feeding in the next month or so, we can wait on the GT, but if they are not optimistic about improvement soon, we ought to go ahead with the G tube. He says Eliana is doing SO well from a cardiac perspective that he doesn't need to see her again for a while, so you and I will be (if needed) making the Pediatric Surgery referral, and they'll do the pre-op cardiology eval if she requires surgery. She'll also need antibiotics pre-GT, if it is done. I think I'm leaning to a 1) borderline oral motor skills PLUS 2)the aversion issues of NG tube, endotracheal tube, oral suction, etc as the issue here. I am doubting the reflux, but Prevacid should help if it exists. Perhaps (3 feeding specialists we have seen) can convene and see what their shared perspective is.  Just call me after you see OT, and we'll think things through.

So, we have a plan and a direction.  I appreciate that she noted that it would be a joint decision/referral.  I appreciate how she looks at the whole picture - quality of life she calls it - in terms of our care for Eliana. 

If you are reading this, I would love prayers for our therapist.  We will be seeing her tomorrow morning.  Prayers for wisdom in knowing what the future is looking like in order to make the best decision for our sweet girl.  Prayers for peace with whatever the decision may be.

This journey is not one that I would ever have chosen, but admist the struggles I have been blessed over and over again.  Many, many times God has used precious friends - and strangers turned friend - to touch our hearts and bear our burdens.  I pray that as I walk this path that I would learn to do so with peace, love and trust in the One who loves me completely.  I still have much to learn.

Thank you for your love and support!

With love,

Leslie

  

Maybe I should have chosen a different name

for my blog.  I don't feel so joyful right now.  I feel like I cry so very often - and wonder how long it will be before tears cascading down my face aren't the norm.  For those that don't know me in real life, I wouldn't consider myself a crier at all.  I really don't like to cry (and thus avoid sad movies and books as best I can). 

Today just a simple something has sent me into tears and I'm having a hard time stopping.  Today I started working on setting up meals for my sweet friend Catherine.  We've done this back and forth for each other many times over the years.  This though is the "last time".  Each of these "last times" is hard.  She is due to have her baby next week and I am hoping to set up meals beginning when she comes home until they move.  Just thinking about that breaks my heart.  It's so close now.  I'm working on a month of meals - just a month.  How can it be here already?  We knew that the day would come and it a little easier to ignore (for brief times) when it was further away.  No more of that now. 

Please pray for us as we deal with a lot of emotions over this move.  We've walked beside each other for the last 17 years - through marriage, pregnancies, miscarriages, Down syndrome (both of us!), surgery and more.  Some of those were things that were so exciting to go through together.  Others have been hard and painful.  Moving was not one we ever expected.  Just seeing the for sale sign in her yard seems so wrong.  This just wasn't the plan when we built our houses beside each other 8 years ago.  I am so very thankful that God blessed me with such a precious friend so many years ago.  I know that our friendship will not end, but it won't be the running back and forth to each other's houses that we are so accustomed to doing.   

I know God can and will work in all of this for good.  It's still hard though.  I've been crying on and off for hours.  The weight of all that I'm dealing with still feels so very heavy at times.  I know things will work out.  I know that God is with me - carrying me much of the time.  I know all of that - but I still feel sad.  Need to go as I have three wild little boys.  More update later on the conversation between Eliana's cardiologist and pediatrician.

Tearfully,
Leslie

ETA:  It's 7:30pm now - a couple of hours have passed and I'm doing much better now.  Well, at least I'm not crying any longer.  I'm not sure much will take away the sadness.  The distraction of supper and a house full of active and noisy children does help!   I love being a Mom!  (That was why I chose this name for my blog.)  Being a mom has been the most amazing experience.  I've learned so much and wouldn't trade it for the world! 

I thank God for the opportunity to be a wife, mom and friend.  I am thankful for the many blessings in my life.  I am seeking to find joy in the journey - to find my joy in Him.  Some days it is really a struggle.  I am hoping to learn to rest in Him, to cling to Him and to live only through Him.

Update ... though not a lot of news

Some days do you just wonder where your time goes?  At the end of the day sometimes I wonder why I haven't had time to do even some of the basic things - but it's been so long that I'm becoming more used to it.  Probably not a great sign - though maybe I'm getting to be more relaxed.  Stop laughing if you know how "driven" I can be.  I do know how to relax too - and have had LOTS of opportunities to learn that recently too.

My oldest 5 children went to VBS this morning (and had a great time) while Eliana and I headed over to cardiology.  We met the nurse that we see each time we are there, but today she has on a v-neck top and I noticed her scar.  I told her that I didn't realize that she had also had heart surgery.  She has had several in addition to breast cancer.  She is such a sweet gal and I told her that her empathy for others was readily apparent.  Isn't it amazing how we can be walking on our own path and not realize what others so close to us are going through - or have gone through. 

We saw a different cardiologist (a fellow) today initially - though one we've seen before.  When he looked at Eliana, he commented that he remembered her from her stay in the hospital (for her heart surgery).  What reminded him  - was her bow!  (He even commented that it was the same color that she had on then.)  It really is something she is known for and now that we are using it to hold her tubing away from her face it's a necessary thing each day too!. 

He checked out her heart (looks good) and lungs (no fluid) and thought she was doing well.  Everyone we saw today commented on her scar/incision site and how "great" it looks.  I asked about a swallow study (someone had suggested it to me) and he said that the referral for this would come from her therapist.  It's really only to see if there is fluid in the lungs which doesn't seem to be her issue.  He asked if I had questions for our regular cardiologist and I said that I wanted to talk with him about the G-tube. 

While waiting for Dr C, one of the echo techs came in and chatted with me.  She is pregnant with her first and I hope that some of what I shared with her was an encouragment.  Dr C came in with the other Dr. and we talked for a good while.  He liked the positioning of the tube and I told him that I'd given him credit for it whenever someone commented on it. 

He told me that from a cardiac standpoint that Eliana is doing great and that he doesn't need to see us for a few months.  (She will need another echo in 2 months.)  I jokingly asked if he was trying to get rid of us.  He said he wasn't and that he would continue to follow her for feeding if I wanted, but that her feeding issues were no longer cardiac related.  He thought it would be helpful for one doctor to be the point person in terms of managing Eliana's care and in making decisions.  I told him that I felt sure that her pediatrician would feel comfortable in this role and he said he'd call her to discuss it.  I'm so thankful to have medical professionals that are willing and interested in working together.  I know our care is better because of this!

We talked about the option of the G-tube.  He does not want to rush into getting this.  He wanted me to find out from her therapists whether this is a skills problem or a feeding aversion/oral issue.  He said his recommendation would vary depending on the answer. 

If it is a skills problem, then we would probably need the G-tube.  If it's some oral motor or feeding aversion then he would like for us to try to deal with this problem to see if we could avoid the G-tube. 

He looked up the reports from the latest 2 feeding therapists to see what they had written in terms of recommendations.  One recommended the G-tube.  The other was interested in working with Eliana for a while to see if we could make some progress.  She thinks that there is no rush to getting the G-tube.  Dr. C called the first a pessimist and said that he agreed with the second one.  I told him that we would see the 2nd gal again on Wed.  He wanted us to talk more about our options after seeing her.  He thinks  that if it would only take a couple of months before she can maintain caloric intake then we could avoid the G.  He also suggested that starting solids might be a good thing too.

A couple of months sounds like  looooong time.  Though honestly if I'd known all that I've gone through in the last 6 ahead of time, I'm sure it would have sounded impossible.  One day at a time.  One step at a time. 

So I have my homework in terms of talking with the OT on Wed morning.  I'm looking forward to hearing what she thinks and has to say in terms of a recommendation.  I don't want to rush into something that I'll regret and on the other hand I don't see any point in postponing if it is inevitable.  Kwow what I mean?  It's hard when all of the advice isn't consistant, but I'm OK with that too.  (At least for now.)

We came home and rested - all but the 5 and 7yo boys.  It was soooo nice to have a nap!  Shortly after getting up, Catherine called to ask if her children could come over for several hours.  We had a fun time together and now everyone is asleep and Eliana is getting her last feeding.

I also called and talked with Eliana's ped this evening.  I updated her on what had gone on and told her that Dr. C was planning to call her and talk.  She asked me to let her know about the OT/feeding meeting on Wed.  One thing that she told me was that the other factor to consider in deciding about the G-tube is quality of life - trauma of putting in the tube multiple times, damage to her skin, and problems in her throat just from having the tube in so long. 

Prevacid I gave orally tonight.  Eliana spit some of it, but I think most went in.  Some did get stuck in the syringe and I probably need to figure out how to handle that too so that she is getting her full dose,

Well, I think that's it.  I'll edit if there is more to add later.  Eliana's feeding pump just finished and I'm exhausted.  Thank you for your continued prayers. 

Here is a Bible passage that a friend shared with me that was very encouraging.  I hope it will be for you too!

It's 1 Peter 1: 3-9

3Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4and into an inheritance that can never perish, spoil or fade—kept in heaven for you, 5who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. 6In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 8Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9for you are receiving the goal of your faith, the salvation of your souls.



With love,

Leslie

It's out again ...

and I'm just sitting here crying.    I don't know why I'm feeling so overwhelmed by this right now - but I am.

It was her tube that was clogged again. This time I was sure. I gave her med (which I think is what clogged the tube as it was a powder dissolved in water - though not very well no matter what I did). Afterwards I tried to feed her and started getting "flow errors" from the pump right away. I did a quick check of the pump then decided to try to flush water down her tube. It wouldn't go at all. I kept pushing it and finally the syringe just popped off spraying the water everywhere.

I had no choice but to remove it. I'm not sure how soon I can put it back in. I tried to flush the tube once I had removed it - and couldn't then either. She cried and cried as I removed the tape. She has red marks from the tape even though I was as gentle as I could be in removing it.

Just feeling overwhelmed right now. Earlier today I thought I'd look at painting a room in the house. I thought it might be fun to do something that was not serious and thought that the color would cheer me up. I even felt frivilous in thinking about it - something I haven't had the freedom/time to do in what seems like a long time.  Feeling slapped back to reality pretty quickly.

Not meaning to have a pity party over here. It's not that big a thing - it's just one more thing and I'm feeling spent.

We visit the cardiologist tomorrow (Monday) and her ped wants a phone call after the visit. I'm guessing we'll start talking about surgery again.   We just can't keep putting this in over and over and over. 

I feel like I've rambled a bit now. Just feeling sad. My sweet Rebecca has been trying to cheer me up with hugs. I have so much to be thankful for - I really do. I know God is with me.  I know that He loves me.  I know that I have not been forsaken.  I know that things will work out. At this moment though I'm just Thank you for your prayers.

ETA:  It's 1:30am now.  I'm up with Eliana while she is getting her last feeding of the day.  Her schedule was thrown off when we went to church this morning.  Which was a nice time and not hard at all.  We didn't see many people there.  And then it was thrown off again when she had some by bottle and coudn't finish the feed.  She ended up missing the rest of that fed - or I would be up all night trying to fit them back in.  (I can't reinsert the tube for at least an hour after it's come out and she has eaten or she may get sick.   Highly likely given how hard it is to get it in.)

I can see in her tube and it is definitely the prevacid that clogged it up.  In more than one place - though mainly a big chunk in one section.  I tried dissolving the tablet in room temp water - by putting the table into the water, as well as adding water to the tablet.  The directions say not to crush, though I did stir.  I also tried shaking it when I added it to the syringe.  I couldn't think of any other options to try at the time.

Her tube is in.  As usual lately, it was tough to get it in.  It just gets stuck on her gag reflex - over and over again.  :cry:  My friend Rebecca helped this time.  She was calm, but I don't think it was easy for her either, especially when Eliana gets to crying.

Thank you dear friends for your notes and your prayers.  I am deeply blessed in so many ways!  Trying to go now and respond to your sweet comments.
With love,

Leslie

A Full Day and more updates

Just wanted to update.  It's probably obvious that I didn't go on the trip to the conference.  I really wanted to go but with all of the problems that we had with the feeding pump/tube on Thur night, it's probably best that we were home.  I wouldn't have wanted to deal with all of that in an unfamiliar environment.  I had prayed and asked God to work things out with the room if it was His intent that we should go and I do believe that staying home was best. 

Here is a little bit of what has been going on the last couple of days.  Thursday morning we had an appointment with the feeding therapist.  Eliana did better for her then (was really fussy the first time we saw her a couple of weeks ago).  After watching her, she didn't think that she exhibited signs of reflux.  She did think that at times the flow of liquid was too much for her and tried to work on slowing that down by tipping the bottle at a different angle.  (more horizontal)  I'm to work on feeding that way in addition to stimulating the muscles on her face and in her mouth.  We'll see if that helps any.  She also mentioned that she didn't think we were in a critical time frame or hurry for the Gtube. 

We (Eliana and I)  both took a long and much needed nap together on Thur afternoon prior to her physical therapist coming over.  She worked hard and is continuing to improve.  I think I mentioned last month about the scale she was being measured on and how she was already behind.  Well, she looked at the scale again and Eliana has improved 6 weeks worth in the last 4 weeks.  Yippee!!!  Way to go sweet girl!  The PT was very encouraging about her progress.

Friday, Eliana's ped called to see how she was doing.  (Isn't that so nice?!)  She had talked with a couple of therapists that had seen Eliana.  She wanted to try Eliana on prevacid to see if it helped any at all.  It would help if she has reflux or any other damage in her throat.  Even though we both think she has no signs of reflux, this is just a precaution to see if it can help at all.  I can see how she could have damage from the tube being inserted so many times so I'm glad to try something that might help.  We talked for awhile about how things were going and about our options for the future.  We are both thinking that the Gtube surgery is likely to be happening.  She wants me to call her on Monday to update on the cardiology appointment and on the prevacid.  On the prevacid, it is a dissolving tablet that I'm having a hard time getting to dissolve completely.  I've tried placing it in water and pouring water over it.  I am concerned that if it isn't dissolving completely that it could end up clogging her tube.  (I inject the medecine into her feeding tube.)  I would love any tips if anyone has them.

Saturday, Eliana and I venture out to lunch to celebrate a friend's birthday.  It was our first social outing with the feeding pump.  I thought it seemed like a good place to be with other Mommies and nobody else to have to watch out or care for while I was out.  It was a fun time with the girls.  Eliana didn't like being in the restaurant so much as she was a little fussy and wouldn't eat at all.  She did sleep some while being held.  Later while we were looking at books in a small homeschool store, she took a bottle and ate about half of it (2 ounces).  I was encouraged to see her improvement.  Tonight we had friends over to give out awards for our Keepers of the Faith club.  All in all, a busy and fun day!  A little much for Eliana, but it was good to see what it takes to go out and about. 

We are going to try to go to church tomorrow for the first time since Eliana was born.  I'm guessing it may be a hard and/or emotional time for me.  I'm not sure why I think that - but I do. 

I appreciate all of the sweet comments that many of you have left and I'm going to try to respond to them.  I continue to feel so very behind on so many things - especially thank yous.  I was thinking tonight of a very thoughtful gift from two gals Roger works with that was given to me just before Eliana's surgery.  It was a bag with a couple of magazines, mints, chocolate, lotion, kleenexes and gum to take to the hospital.  So sweet to think of the details of what I might need while I was in the hospital!  (If you are reading this - thank you Martha and Starla!)  I have so many people to thank!!!  If you are reading this and are  one of those sweet people - thank you!  I do intend to write notes, but it probably will still take me awhile.  It doesn't reflect my gratitude however on the many precious gestures and gifts with which people have blessed us.

It's late and I'm heading to bed.  Will work on updating more tomorrow - maybe with a bracelet update and some photos.

With love,

Leslie

 ETA:  Thank you Karen for posting on the T21 board about our feeding tube problems - and to the gals that responded to me here!   I appreciate your help and encouragment so much!!!  Will try to respond more to you tomorrow.  It's much too late here (2:45am) and I'm going to sleep now.

Feeding tube update

I could find nothing wrong with the pump or external tubing.  I did all of the checks and even ran the pump into a bottle and it worked just fine.  So, even though it wasn't what I wanted to do, I removed her feeding tube last night about 2:45am.  She was able to sleep through me doing this - with a lot of moving about.  I let her sleep through her next feeding and planned to put it in for her 9am feeding.  It was probably too long to let her go, but I hated to wake her to put in a tube as it's just really hard these days.   Her gag reflex is working very well and it makes this a real challenge.

Catherine came over to help and it was hard getting it in! I tried repeatedly to get it past her gag reflex and it just wouldn't go. I removed it a couple of times and just as I was thinking I might have to take her to the hospital to have someone else do it - it went down.

The tube near her nose keeps coming out a little and I'm hoping that it won't be like that as it will make it easy for a little finger to grab onto it. Just praying that this one will stay longer. It's just hard on both of us.

Thank you for your prayers. Feeding continues to be a big struggle here. I'm not seeing much to be encouraged about, though I'm still hoping. More and more I can see some benefits to having the Gtube surgery - though the thought of another surgery is not one I can dwell on for long.

Love to you all,

Leslie

Needing wisdom!

Hi All,

If you are up late and reading this, could you please pray?  Something is wrong with the feeding tube/pump/bag - I don't know which or what.  *sigh*  Just when we figured out a placement for the tube that isn't getting yanked out, I'm wondering if I'm going to have to pull it and start over.

I tried doing a feeding about 12:30.  She was awake but wouldn't take the bottle.  I tried this for a short while, but when it was evident that she wouldn't take it, I hooked her up to the pump.  It ran fine for awhile and then began beeping with "flow error" messages.  I tried all that I could think of to get it to work.  I drained the bag, and restarted it.  I shook up the formula to see if any of the added powder had settled.  I tried resetting the pump.  All of that still resulted in the flow errors.  (Did I mention that this equipment came with no manual to help with any problems?  Thankfully I had read the manual that came with the first pump we had and know at least some of the common problems.) 

When I drained the bag a second time it seemed like there had been no difference in the amount of formula in the bag - even though it had been running.  I'm not sure if there is a clog in "her" tubing.  I tried flushing her tube with water.  It went, but was a little difficult to push in.  I also tried "listening" to her stomach with the stethoscope, and while I heard a noise, it didn't sound like it normally does.  I'm not sure though if that is because it isn't empty like it normally is when I check tube placement prior to a feeding or if it's clogged or what. 

I've been praying for wisdom.  I really don't know what to do.  It's late and not like I can phone anyone.  The pump has no directions and I can't find anything on-line.  (I really don't see what could be malfunctioning here though as I've checked as much on that as I can and it seems to be working fine.)  The only next step I can see is to remove Eliana's tube.    I just don't want to do that.  It hurts her.  I'm concerned about damaging her throat with the reinsertion. 

I was so excited to have had this tube in for a week!  That's the longest in quite a long while.  I was hoping to make it until next week so that we could stretch out the times between tube placement.

Could you join me in praying for wisdom?  I know that God promises to supply wisdom and I really need it.  You could also pray that I wouldn't continue to be frustrated with my dh who went to sleep while I'm up trying to figure this out.  I know he doesn't know what to do either.  Being a parent is hard sometimes - but I wouldn't trade it for the world!   

ETA:  Just found instructions on line about the feeding pump and I'm going to go check out each one of the possible reasons for errors.  Here's a link if anyone is interested. 

http://www.horizonhealthcareservices.com/resources/kangaroo_pet.htm

Thank you friends!

Leslie

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!