Happy Easter ... a little late

I know - it's been almost a month.  I did want to post and share some pics though and better late than never, right?!

We visited our dear friends in Virginia for the week-end.  We have shared many years of Easter activities together (egg hunts, and other fun times).  Since we are no longer able to pop right next door, this was a fun extended time of being together.

We made resurrction rolls.  This is a great way to explain the resurrection to young children and is an activity we've been doing since Christopher was a very young boy.  You take a marshmellow to represent Jesus.  You dip the marshmellow in butter and then cinnamon sugar to represent the oils and spices that were put on the body for burial.  Then you take a crescent roll and wrap it around the marshmellow.  This represents the tomb in which Jesus was buried.  You then bake them.  (Make sure your seals are really good on the crescent rolls or it will leak.)  When you take them out, the "tomb" will be puffy and inside it is empty - obviously representing the empty tomb.  It's a neat visual for young children - and a tasty treat as well.

We also had an egg hunt.  The tall grass made it a fun challenge.  When Daniel had finished finding his eggs, we hid them again as the search is most of the fun.  Well, the eating what's inside them is fun too.

I just liked this photo of Christopher and Eliana.

This is a photo of us all dressed up after church.  It was bright and I know I'm squinting.  It isn't the best photo - but it's the only one we have.

 

I like this photo of the kids better. 

Eliana is wearing a dress that my Mom made - for Rebecca.  I love seeing her wear things that her older sister has also worn.  We've waited a long time for a girl to wear this again.  We have quite a few beautiful dresses made by Nana for Eliana to wear. 

We also made cookies and decorated them.  It is fun watching them display their own ideas and creativity in making designs. 

Daniel

Isaiah

Joshua

Rebecca

We had a wonderful time with our sweet friends.  I'm thankful that they are close enough to visit - though still wish they were right next door. 

Tomorrow the children and I are leaving for an overnight field trip.  It's our first since Eliana was born.  I'm excited and a little nervous.  We'd love prayers for travel safety, sleep (it's a lot to sleep in one room) and good weather would be nice too.  I'll share more when I return - as well as photos from our last field trip when we went flying!

Blessing to all of you!

Leslie

Time for a photo!

It has been awhile since I posted a picture.  This one of the kids and I at one of our FIAR group field trips in March.  We were at Harris County Lake Park.  The older children had a class at Shearon Harris Nuclear power plant.  The fun thing is that it was taught by a former homeschool mom (that even used our curriculum)!  Everyone learned a lot and found the hands-on exhibits fun and interesting. 

While the older kids were at the power plant, the younger children had ranger led classes at a nearby park.  These were also experiential including games, facts about animals and going on a short hike. 

It was a cold, but beautiful day.  We stayed for a picnic lunch and the day warmed up.  The kids played on the playground equipment, exploring the park and played kickball on a large field.  I loved having a large span of time to just relax and enjoy my friends and family.  Our family stayed with another family until dinner time.  It was a fun and relaxing day for all of us. 

More on healing

I've been pondering things this week.  Some of it heavy.  I was personally struggling with the loss of our little one.  Reminders seemed to hit on a day when I was emotional anyway (ladies know what I mean).  It's only been a month and the physical reminder was one that just served to emphasize the loss.  (I hope this makes sense as I'm trying to be discreet.)  I just need more time to mourn the loss of this little one that I loved even though we've never met.

I've also cried for other families this week as they mourn the loss of a child that they have known and loved.  Three different families with a sick child who last their battle this week.  Prayer requests for this child for health and healing that weren't answered in the ways we had hoped.  It's heartbreaking to think of losing a child.  One little boy named Paxten who lost his fight with cancer, a little 5yo girl who had heart surgery with complications and a little boy named Noah with Down syndrome who died from pneumonia after having a bone marrow transplant.  I'm thankful that these sweet children are in the arms of Jesus, but I grieve with the families that are mourning. 

In the midst of pain I am constantly reminded that God is good.  The Lord gives and the Lord takes away - blessed be the name of the Lord.  He never promised that this life would be easy.  He has promised to always be with us.  I'm so thankful He is there.   

In counting our blessings here, Eliana is doing great!  Her site is healing beautifully - well, it's not leaking.  It does look good - but funny.  I'm guessing it will eventually look like a second misplaced belly button.  LOL  We'll see.  I'm thrilled though that she is no longer leaking!!!  She is continuing to learn and grow and just delight us all.

We've had some sickness here - though thankfully not bad.  Fevers, sore throat, lethargy - no bodily fluids involved in this sickness!  Daniel seemed to have the worst of it Sat night and Sun (yesterday), but was bouncing around full blast today.  Rebecca came down with it last night and is still feeling poorly.

We would love prayers for healing - and that this not have to be passed through the entire family.  I would also love for you to personally join me in praying for these precious families that have lost their beloved child.

Blessings,

Leslie

Healing is happening!

Praise God!  The first 4 days were rough - lots and lots of leakage.  At times I wondered if I should be doing something more or different.  She didn't seem dehydrated though and so we just plugged along doing the best we could.

Yesterday (Tues) was the first day I could see any improvement.  Today has also been much better!  The leakage is much smaller and is contained by the pads.  Also her site is looking better.  There is a strange "black string-looking thing" coming from the site.  I haven't had the nerve to pull on it until tonight and it is definitely "stuck".  I'm not sure what it is and am hoping that maybe it will fall off.  If not, I'll call our ped.

So, the surgeon was right.  It would close on it's own - with no intervention at all.  I'm thankful for that.  I'm thankful Eliana did not have to have another surgery.  I'm so very thankful that the tube is OUT!!!  Yippee!!!  Now, I'm feeling like I can celebrate and enjoy. 

The bandages are irritating her skin.  I'm treating it with mylanta.  (Per the surgeon's instructions.)  I'm not sure how much longer we'll need to keep things bandaged.  We'll just play it by ear and do our best. 

Thank you for your prayers and notes of encouragment.  I'm thankful for you dear friends that have walked with us through our ups and downs. 

This note is short.  We've had a busy day.  In between trying to do school, we had 2 therapies this morning - sensory/feeding therapy for Daniel and then feeding therapy for Eliana.  In the afternoon, physical therapy for Eliana.  So many things to remember and try to do.  It really goes against my "go with the flow" nature in terms of my days.  I'm learning though and working to get better.  Maybe in truth it's just laziness and I'm learning to be more disciplined.  That is a good thing too. 

Tomorrow we are expecting a visit from my parents.  We are all very excited to see them!  In the morning before they arrive we are scheduled to go on a field trip - flying!  It is weather dependant so we'll see if we are able to go up.

I need to get some sleep now.  Thank you again for your prayers.  I'll try to post some Easter pics soon.

Blessings,

Leslie

Small update on Monday

Hi Friends,

Thank you for your prayers for our sweet girl.  She is doing pretty well overall.  She is quite a tough and happy little girl!  She has decided over the last two days that she really likes crawling up the stairs!

Saturday  was a rough sleep night for her so I gave more tylenol yesterday and it really seemed to help.  She doesn't seem to be in a lot of pain except during changes of her bandages.  Perhaps though she just doesn't complain and it's good for me to give her a little tylenol just to help her out. 

In terms of leaking, yesterday was a better day.  I was really thinking maybe we had turned the corner until her evening feeding and she was soaked.  It looked like I had just poured the formula all over her little shirt and body.  When I changed her at this time I also noticed that Eliana is bleeding some around her site.  Not a lot, but it's never a comforting thing to remove bandages and see blood.

We would love your continued prayers for healing and wisdom for us to know if the conditions would warrant her being seen again by the surgeon. 

Sorry this is short, but it's morning and I need to tend to some sweet children.

Love,

Leslie

Our first 24 hours ...

of being free of the g-tube have been ... WET!  LOL  Seriously, wet.  I'm not surprised since she has a hole in her tummy.  It wasn't so bad the first 5 or 6 hours because some of the cauterized parts I think blocked some of the flow.  That isn't the case any more however.  Yesterday Eliana went through 6 outfits and I went through 3.  Yuck - too much information?

We have new neighbors and were outside talking with them last night - just meeting them and getting to know them a little bit.  Well, it was just after Eliana had eaten and I was holding her.  I felt her begin to leak, but didn't realize that it was as bad as it was.  We were both drenched.  What a way to meet someone, huh?  They seem nice though so hopefully it will be something we laugh about one day.

Eliana is feeling fine!  Yippee!!!  I'm so thankful she is not in pain.  She does not like bandage changes, but her skin is looking fine so far.  I'm putting Mylanta on her skin to help with the acid from the leakage.  Hopefully this will help.

I've found that she does better, in terms of leakage, if I can hold her reclined for 30 minutes to an hour after eating.  This works fine if she has fallen asleep.   Obviously it doesn't work if she is awake and those tend to be the really  messy times. 

As of this morning, with a big messy leak, I think it's best we stay home from our out of town field trip.  I hate to miss this time with friends, but think it would be too hard and just not the best for Eliana or I right now.  Sometimes it's hard to put *my* needs ahead of what my children would want, kwim?  I know that is part of my struggle in this decision.  I guess it's a good opportunity to talk about sacrifice and choosing to put others first.  I know they will understand.

I've been asked what Eliana's button looked like when it was pulled out.  (My dh wanted to know!)  I didn't see it.  At this point, Eliana was very upset and my eyes were on her.  Here is a picture though for those who are interested.  The large part at the bottom was the part that was in her tummy.  The tubing is the size of the hole in her tummy.  (Thus you can see why it hurt to have something large pulled out of a smaller hole.)  I think too that the skin had probably attached to it (thus the bleeding and need for cauterization).  Enough of that.  She is really feeling fine today.  :-)

Thank you for your prayers.  I'm thankful that this is the beginning of the end of feeding tubes.  I called yesterday to the medical supply company to let them know we are finished with the pump.  I will be glad to have the last of the medical supplies/machines out of our bedroom.  It's been 15 months of machines and soon - none.  :-)  Yippee!!!

I've learned a lot and hopefully am more tolerant and patient as a result.  I'm thankful for all that I've learned - though I would not have chosen it.  I am trying to walk each day one at a time - living, loving and learning with my precious family.  I am so richly blessed!

Thank you friends for your prayers.

With love,

Leslie

G-tube is OUT!

Her tube is OUT!    Wow, have I looked forward to saying that!

It was painful and she cried a LOT. I'll try to write more later when I have 2 hands. It sounds like the next couple of days may be challenging with leakage, dressings, etc. We would appreciate your continued prayers. (More specifics later.)

MORE INFO:

I awoke early this morning (for me and with the help of an alarm - LOL).  Eliana decided to sleep in.  Isn't that always the case?!  I did wake her about 8:15 so that she could eat before we went in.  My sister was here with the children and they were all excited to play!

When we arrived, we had a long wait.  I sat beside a woman and her son.  He has a rare syndrome which has left him profoundly delayed - both physically and mentally.  He also has a g-tube which she asked me if Eliana had.  As I watched her with him, I thought of what challenges she has faced.  She has only ever met ONE other person with a child with this syndrome.  That's hard to imagine from a support and knowledge perspective on how she has dealt with things.  Praying she would find comfort, strength and wisdom as she walks this path.

It also made me reflect on on the future (which I try NOT to do very often).  I often get comments on how cute Eliana is - and I believe it!  I know I'm biased, but I think she is adorable.  I know that things will change as she ages and that to have disabilities as you age is hard.  I was going to write more, but think this is probably good.  Back to the blessings of the day!

We finally met with the surgeon, Dr. Rice, who said it looked like she was doing well and asked if I was sure I wanted the tube out.  I told him "Yes" and said that we hadn't used it since late Oct/early Nov when she'd had salmonella.  His next question really caught me off guard.  He asked "Why did you wait so long?"  Huh?  I didn't realize that it was a choice!  Because my ped told me too!  I've been wanting this out for months!  We were told to wait through the sick season and then get it out.  I was even told the surgeon may not want to take it out.  He said that he was willing to do whatever the parents wanted.  He only asked because he has had people come back a day after it was removed wanting it back in.  I assured him that we were ready!

The next few moments made me again feel like an unprepared Mommy.  He asked if she'd had tylenol.  I said no, but that I'd like for her to have it if he were going to remove the tube.  If I'd known, I'd have given it to her in advance.  I should have thought it through and given it to her anyway.  Parenting isn't for cowards and there are so many opportunitites to "beat yourself up" over your mistakes. 

He took a look at her site and then said he would take it out.  With one hand on her stomach, he used the other to just yank it out!!!  (There was nothing to deflate as she had a BARD.)  No meds, no pain relief - just a hard pull and it was over.  It clearly hurt her too as she began to cry and scream unlike her normal cries.  It was hard for me not to sob with her.  She had a LOT of leakage too - a lot (both blood and stomach contents).  He applied multiple pads to clean up her site and then I got a peek.  Ugh.  Poor baby.  He used silver nitrate to cauterize the inside of the site to help it stop bleeding.

All this time she is crying and crying and I'm doing my best to comfort her.  Dr Rice then puts a bandage on her and tapes her up.  I hold her thinking she may settle, but she doesn't.  She cries and cries some more.  A nurse then came in with tylenol, which I gave her, but this doesn't settle her down either.  A little boy from another room even comes to peek in to see what is going on.

Dr Rice said that for the next several days that her dressing will need to be changed often - every couple of hours as she will leak whenever she is fed and just through the day as well.  I need to watch the amount of leakage because if it is "too much" then she could get dehydrated.  He said things should improve (amount of leakage) and begin to heal after several days.  If she is not completely healed by 3 to 4 weeks, then I need to call and have her scheduled for surgery to close the site.  Oh, I'll need to watch her skin with the tape too so that it doesn't "break down".  She has had problems with this in the past.  All of the leakage will be acidic which is hard on the skin.

I expected this moment to be filled with joy - and was caught off guard by some of the other emotions I felt including sadness.  And guilt over not being better prepared.  The stress of dealing with medical issues can be hard - especially when it's your child.  We are supposed to travel in 2 days with friends and I'm wondering if this will be feasible.  In fact, when I asked the surgeon if this would be a bad week-end for travelling, he looked at me surprised that I even asked.  He said it wouldn't be the best, but I could probably do it. 

If you have read all of this, thank you.  We would love prayers for the following things.

•  Healing of her site with no infection or problems.


• Her skin - that it would not break down under the constant changing of tape and dressing.


• Wisdom in knowing if her leakage is "too much" and if/when to seek help if it is needed.  (This would be a hospital trip.)


• Is it too much to ask that her site heal on her own without the need for further surgery?  I really just want what is best.


• Wisdom on doing what is best for Eliana - including knowing when to change my plans in order to best care for her.

That's all I can think of at the moment.  Please pray as you feel led for our family.  I'm so very thankful that we are almost at the end of this chapter.  I'll feel that it is complete once she is healed.  I guess I hadn't really looked beyond getting it out until now. 

Eliana fell asleep on the way home and had a short nap here.  When she woke up, she was happy.  She is smiling and seems herself.  Thank you God!  I'm planning to continue giving her pain meds today and as needed. 

One other thing, Dr Rice asked if the g-tube had been worth it.  Had it been helpful?  Absolutely!  She had enough damage and trauma from the NG that I don't think she would have learned how to eat without it coming out.  Her progress was slow enough too that she needed the g-tube for a solid couple of months to help her maintain her weight and fluids.

I am thankful that we had this opportunity.  I'm thankful that this was available and an option for our little girl.  I'm thankful for Dr Rice (he is soooo nice!) and the many others that have cared for us.  I'm grateful to the Great Physician who has held Eliana in His hands since long before we knew or loved her.

We are blessed beyond measure!  Thank you for your prayers.

With love,

Leslie

What's new with Eliana?

I’m feeling behind here – and in most areas of my life.  LOL  You’ve heard that before haven’t you?  Just want to make sure that I don’t ever portray a super mom image – I’m not one!  Just trying to do my best each day – often failing and thankful for grace and forgiveness and fresh starts.  I’m also trying to just live life – letting go of things that I can’t get to and trying to get to the things that matter most.  Sometimes I do better at this than other times.  There is always so much more to learn!

I wanted to update a little on Eliana and all that she has been up to.  I’ve already typed this once and lost it – ugh!  Going to try to do it again and get it saved this time.   I am having trouble with photobucket and am not sure what is going on there!

Eliana can crawl up the stairs on her own, though needs a lot of encouragment and enticements (toy or sibling cheering her on).  She doesn’t typically try to go up the stairs on her own, which I can’t say that I’m too sorry about.  It seems a little silly to work on a skill (I know it’s a good one) that once mastered we will do all that we can to keep her from repeating.  We aren’t able to teach her how to go down the stairs safely at this time due to her g-tube.

So many things to teach.  So many things you take for granted with most children.  You just don’t set out to teach them a whole lot of things – they just learn on their own.  Like how to eat, how to stand, how to speak and more.  I’m amazed and thankful that people have figured out ways to teach these children that don’t learn in a traditional manner.  I had someone ask me if working with Daniel’s sensory issues was a lot harder than Eliana’s "stuff".  It doesn’t even come close!  I know that through all of this that God is going to teach me so many things that I need to learn!  I’m thankful to be learning from a cutie pie.

One of the new things we’ve been doing is using pictures on a piece of paper to help her communicate.  Her therapist made a sheet with some of her favorite things – cow, turtle, music, book, ball and bear.  We will point to the picture and then ask her if she would like it.  Or talk about it.  If she points, then we give her the object, in essence rewarded her for asking.  We are using this in addition to speaking the word and sometimes signing the word as well.  Hopefully using a combination of methods will help her to learn and be able to communicate with us.  She is babbling, but not really saying words yet.

I’m thankful that Eliana has numerous teachers – from therapists to her siblings.  She is blessed to be surrounded by so many people that love her.  Rebecca has been trying to teach her "doll".  She says the "d" sounds when Rebecca says doll, which delights Rebecca.  She has also been trying to teach her how to feed the doll a bottle. It’s really cute.

Eliana had physical therapy today and her therapist was very encouraging!  She commented on how much better Eliana was doing at things from just last week!  This with being gone most of the week too!  Yippee!!

She is cruising on the sofa!  It's really cute.  We remove the cushions to make the height a little easier for her.  She is doing a lot better than last week when she did this for the first time.  She also stood on her own - very briefly - twice today.  Once for me and then again while her therapist was here.  She is learning how to squat from a standing position and also how to stand from a squatting position.  All of this is hard work - and she is doing so well. 

Here is a look at the rest of our week:

Tomorrow we have speech therapy and then my sister and her children are coming to visit.  We are very excited to see them as it has been several months.

Friday we have an appointment with Eliana's surgeon to talk about removing the g-tube.  I'm not sure if he might remove it then or just talk about it.  I really don't know what is going on.  We would love your prayers.  I've been told that the removal of this g-tube (Bard) is a painful one.  Later that day, my oldest will be doing a dissection with a friend of a crayfish.  Yuck.  Then that evening we have our sweet friends from VA coming for a visit.  There's more, but that's probably enough for now.

I still want to write and post pictures on Easter (we spent 4 fun days with our friends in VA) and a couple of our field trips this past month.  More later when I figure out how to get to the pics at photobucket.

Thank you to the dear friends that have written me and who are praying for us.  I appreciate both so very much.  I'm trying to write back, but please forgive me for being slow.  We are doing pretty well.  Two of my children still struggle at times with the loss of our little one.  I'm doing OK.  I try not to think about it too much to be honest - though as most of you know, being pregnant can be consuming in regards to your thoughts and it does pop into my thoughts often.  I'm thankful that God is carrying us through this time, like He has through so many others.  I'm not sure what I'm supposed to be learning - though I've gotten better at just leaning on Him and trusting instead of fighting for my own way.  That doesn't mean that the hurt is gone, just that I know He is with me every step of the way.

Here's one last picture of our little angel.

Love,

Leslie

Today's appointments

We met with Eliana’s ped this afternoon. She is a true gem! I thank God often for her as she has been wonderful for Eliana – and for me! I know God placed her in our path while we were at the hospital. I’m thankful she has walked this road with us.

Eliana is doing great! :-) She is up to 19.5 pounds now and is 29". She is still low on the growth chart – but doing fine as she continues to grow on the curve.  Dr. L even commented that she may be getting my height! ;-) (She would be the first!)  One of the first things she said to me when we saw her was to comment that I probably wanted to talk about removing the g-tube! Of course, she was right! We talked about it and she knows that I haven’t used it since Eliana had salmonella in late Oct/early Nov. She agreed that it was time to remove it – though cautioned me that the surgeons don’t always want to be quick to remove them. She called and set up an appt for us for next Fri (10 days from now) to meet with the surgeon! Did I mention that she is fantastic?!  I'm not sure if this will be a consult or if he will actually remove the tube. 

She asked me how feeding was going and I confessed that my priority remained liquid foods as I really want her tube out. She asked if I was counting on the calories from the formula and I said yes. She does eat some solids, but not enough to make up the calories. She thanked me for being honest with her. I can’t imagine being anything else.

We talked some about her falling over, though she didn’t seem concerned. Eliana has not done it since yesterday either. A friend mentioned that it might have been due to flying and the changes in altitude. I’m hoping she is right! What relief to think it might be that instead of any of the other things that I wouldn’t let my mind think about.

We talked about her development and other things – all doing fine.  Dr L also commented that while Eliana has low tone (typical with Down syndrome) that overall her tone is pretty good.  These types of comments are always encouraging to me. 

Eliana had to get the last of her synagis shots today. We won’t be back for 3 months! Imagine – 3 months! That seems such a long time. The longest we have gone thus far is monthly. I’m thankful she is doing so very well!

We drove from her appt to mine (follow-up OB). I arrived a little early and we waited. I was a little anxious about how I’d feel and wondered if being there would set my emotions going.

After I arrived, I was sitting in a waiting room across from a pregnant woman and the tv/video that was running was talking about pregnancy issues when I sat down. (It’s like a news show with various topics – not all are pregnancy related.) I sat there wondering if I could handle this and talking to God about it.  I felt fine.  I was able to look at this other woman and feel happy for her.  Knowing she was joyful as she felt her little one kick.  I was thankful that God would allow me to see things from this perspective and not focus on myself.  

I have felt an amazing peace during this loss - more as times passes. At times it doesn’t seem right – as though somehow it lessens the loss. It’s not to say that I haven’t felt pain and hurt – I have. It was especially hard the first couple of days.  I wonder if maybe - just maybe - I'm learning a little more about leaning on God.  I know that I’ve had more than my share of struggling with God over the last year and this time I’m just trying to relax in His arms.  (I like to actually picture myself crawling into His lap and just being held.)  Knowing that He loves me. Trusting that He knows best. I wish I could stay here all the time. I know it’s my choice and I’m not sure why I ever choose to leave. So many lessons to learn. I’m thankful our Teacher is patient and good.

My healing seems to be good and there are no problems. I spent time just talking with my midwife. She is a Christian which is a sweet blessing. She asks good questions and is patient about listening to me talk things through. I didn’t have a lot of questions – but shared a lot of my ponderings. I appreciate her encouragment.

I have always loved my OB practice. I have gotten to know a lot of people there over the years. Given my HG pregnancies, I find myself visiting far more than normal (Weekly from about week 6 on.) This has given me opportunity to build relationships there for which I’m thankful. I saw one of my favorite doctors (he did most of my prenatal care with Eliana when I was soooo sick), who came up and congratulated me and gave me a hug. I hated having to tell him that the baby wasn’t there as I know it made him feel badly. He loved seeing Eliana and immediately asked to hold her. She is having a hard time though with "strangers" and isn’t happy being held for long. I also saw briefly the dr that delivered her who commented that she had heard Eliana was beautiful and agreed. I spent time talking with several of the nurses and another dr who all seemed to enjoy our little cutie! Overall, my time there was good. I’m thankful for the wonderful care I’ve received there for the last 13 years.

Thank you dear friends for your prayers. I’m thankful to have one more day in which to say God is good. He loves me and blessed me through good times and difficult ones. I’m thankful to be resting in His arms.

With a grateful heart,

Leslie

We are home - and have a busy week ahead!

We arrived home late last night -  Eliana and I.  We were greeted at the airport by excited children with lots of hugs and kissed.  *grin*  We arrived home to a welcome home banner and a party with lemonade, cookies and candy set up.  It was sweet.

Eliana was a great traveller - and that wasn't surprising at all.  She handled the take-offs and landings well.  She slept some on both flights and was a delight when she was awake.  She could not have been any better!  I'm not surprised though as she is really an easy-going baby.  

We visited with some dear friends that I work with on the FIAR website.  I've known some for 10+ years and some for fewer years.  It was a fun time - relaxing and sweet for the most part.  I think Eliana was a bit overwhelmed at times though with being around so many people that she didn't know - though they all "know" her through many prayers over her short life.  I enjoyed having my friends meet her - I wish you all could.  She is such a delight and I love sharing her with others.  I'm glad I was able to go.   

Our week is full and here is some of what is going on.

Today (Mon) we were able to stay home!  I really enjoy those days, especially after having been gone.  I needed a nap and was able to take one too.  (I didn't get much sleep this week-end as I was up late chatting with friends.) 

Our speech therapist came today.  She is so encouraging!  She notices every little thing Eliana does and just praises her.  She is making progress and it's exciting to see her making connections and picking things up.  I think she is a smart little girl - though I'll admit too that I've very biased.  *grin*  She was pointing today at pictures of some of her favorite things (her therapist made up the pics).  She seemed really drawn to the music picture and we did a lot with music today.  I'm encouraged about her progress and appreciative for "things to do" to help Eliana grow and learn.

Tues - Eliana has an appt with her ped tomorrow.  I'm expecting to discuss a time for getting her g-tube removed!  I'm hoping we'll be able to set this up tomorrow.  She is doing well and I am looking forward to having that gone!  It interferes with things (like learning to go down the stairs) and has started to pop open again (which is just yuck!).  It also leaks all the time - not a lot, but again enough to be yuck and to stain her clothes.  I'm thankful we had this option and also ready to just move on!  Hopefully I'll be sharing a big praise on this tomorrow!

Also, I'm not sure why, but Eliana fell over (while sitting) a number of times today (about 4?).  She was just sitting and fell backwards.  This happened while her therapist was here and she commented too that it was very unlike Eliana to do this.  I'm hoping that it was just ... well, I don't know.  Something that will pass, have no effects and not return again.

I have also have an appt to see my midwife.  This is just a follow up to make sure my body has done what it needs to have done.  I'm thinking this will be hard.  It will be hard to just be there - seeing people, reminders, etc.  I would love prayers for this time.

Wed - Therapy day.  Daniel and Eliana will both be doing feeding/sensory therapy in the morning.  Daniel loves this and Eliana seems fine with it too.  It's small steps in terms of progress here though.  I'm not sure I'm doing enough in this area.  I know with  Eliana I've been so focused on liquid/weight gain for the removal of the tube that I let that take precedence over solids.  She is eating more (quantity) and is interested in trying new things.  (Wish I could say that about Daniel - the trying new things.)  Daniel seems to be improving on the sensory front - and the therapist has said that needs to happen before we will see much happen on the food front.  Hard to understand - but we are working on it!

Eliana also has physical therapy.  This is her hardest therapy though she isn't crying as much.  I wonder at times if this is just too much to do in one day.  She does best when she can get a nap in between the two therapies.  We are working on standing/walking skills and she has a cute new little walker to help with this.  I need to get a picture of it!

Thur - Field trip.  This is with our FIAR homeschooling group.  I love this group!  The older kids will be visiting a nuclear power plant for a hands-on discussion about the science of nuclear power.  The younger children will be visiting a state park for a ranger led program on nature topics.  I think it will be a fun time for all.  We'll picnic and play afterwards and just enjoy being with our friends.

Fri - We are planning to visit our sweet friends who moved last summer for Easter week-end.  We are looking forward to this time together.

Whew!  That's a lot in one week.  I'll update as I can on the things I've mentioned above. 

For those that have asked about how we are doing, I want to thank you for your prayers and the sweet notes/cards you have sent.  I'm truly thankful.  This loss of our baby has been hard, but we are daily leaning on God and trusting that He knows what is best for us.  He is good all the time.

With love,

Leslie