Caring for Katie: Q & A

December 18th, 2011

Housekeeping Q:  I left a comment that didn’t appear.  Did I do something incorrectly?

A:  If you don’t see your comment appear, you probably clicked on one of the photos, and commented in response to it.  Every so often, when I check comments, I see that someone has replied to a photo.  The only way to see those comments is to click again on the photo.  So I get to read them, but nobody else does unless they click on that same photo.

Does that make sense?

Q:  Is Katie covered under your family’s medical insurance now that her adoption is finalized?

A:  Our family’s health care plan is not health insurance, it is our membership in Samaritan Ministries International, a Christian health care sharing program that is exempted under federal health care legislation.  We are legally considered self-pay patients.  There are layers and layers of story under this aspect of Katie’s adoption which I cannot yet tell here on the blog!

Katie was added to our family’s membership in Samaritan Ministries the moment she was added to our family.

We do all we can to eliminate unnecessary medical costs and pursue ways to lower legitimate medical costs.  We love our brothers and sisters in Christ who are helping us with our burdensome medical bills; we want to keep their burden as light as possible.

Our final trust is not in Samaritan, though, it is in God.  And at every turn, God has provided.

He has worked through many of you to help put together a care fund for Katie’s needs that are not shared by Samaritan.  We will stretch every penny of those funds, which will be used primarily for various therapeutic tools and equipment.  We are so thankful for each of you who have shared in this way!  We have used a little of the fund already to purchase supplies such as a used IV pole, interlocking foam matting, and an exercise ball.

We currently have well over a thousand dollars’ worth of medical supplies related to Katie’s feedings, all of which were given or loaned to us!

Because Katie is a patient at the Clinic for Special Children, we will receive a 70% self-pay discount on all services we receive from CHOP or DuPont.  The Clinic does not work with any type of insurance, and offers services at free or greatly reduced rates, although the doctors there are world-class.

We do not fear the future years of extra expenses.  Our God knows all about Katie’s needs and has taken them as His own responsibility.  We love trusting Him to provide, we love seeing Him work outside the usual boxes to do it, and we love telling other people how faithful He is!

 

Q:  The brittleness in her bones…what is the eventual treatment for that?  Can it be corrected or reversed?

A:  Yes, it can be corrected, but it will take a long time.  Her bones are in such bad shape that if she rolled off a bed, she would crush them.  Dr. Strauss explained that the three top remedies for her fragile, porous bones are as follows, in this order:

1.  Weight bearing.  We are looking into getting a stander for Katie, and are excited to see how God will provide for this need.  Dr. Strauss is researching whether there is a bone density threshold below which a stander would be contraindicated.  We may need to wait for the results of the DEXA scan.

2.  Vitamin D.  Katie’s vitamin D levels were tested at CHOP, and were precariously low.

3.  Calcium.

We are also considering a medical therapy to help build her bones, but this also needs to wait for the results of the DEXA scan.

As she rounds out, we will have to guard against the impression that she is less fragile.

 

Q:  What about the growth hormones?  Will her body ever reproduce them?  Will they give them to her artificially? Is there any need to do that?

A:  We don’t know the answers to these questions yet.  We should begin getting answers as the CHOP doctors get their reports to Dr. Strauss.

 

Q:  What does the malnutrition do to her body as she approaches puberty?  Will she bypass that?

A:  Good questions!  I’ll take them to Dr. Strauss!

 

Q:  Does she still have her baby teeth?  

A:  Yes, she still has her baby teeth.  We don’t yet know how her malnutrition has affected the development of her adult teeth.

 

Q:  Have her vision and hearing been checked as well?

A: Not yet, but they will!  All in good time, my friends!  Other than her initial visits with Dr. Strauss, we decided to let the non-urgent stuff wait until after the first of the new year.  The hearing testing can be done at no cost through the Clinic.  Her vision testing will be done by the same pediatric ophthalmologist who sees Verity.

 

Q:  I was wondering whether you bolus feed Katie, or do you have a pump?

A:  She gets three bolus feeds during the day via syringe, and a continuous feed overnight via feeding pump.

 

Q:  You said you were feeding Katie little bits of tasty foods; what are you feeding her?

A:  *proceeding to scandalize every health nut out there*

Over the past week and a half I’ve given her tastes of banana, white chili, orange jello made with pineapple juice, with pineapple and shredded carrots, egg yolk from a fried egg with butter, red and blue jello with pear, Clementines, oatmeal with brown sugar, taco bake, homemade chocolate frosting, creamy natural peanut butter, homemade strawberry jam, bananas in orange juice, pizza sauce, soft spiced and sweetened apple from apple crisp in mama’s milk, decaf coffee with milk, oranges, barbecued chicken, twice-baked potato, ripe plum, Dove milk chocolate, mashed potatoes, chicken divan, ham, scrambled eggs with onion and ham, bits of wheat cinnamon rolls [thank you, H!  they were fabulous!] and baby food pears.  I might have missed some.

I use my finger to put the food into her mouth while I am giving her the bolus feed of fortified breastmilk, so that she associates eating with getting a full tummy.  She will only take food from my finger.  Spoons of any kind are anathema to Katie.  We wonder if it has to do with past associations?

What does she think of all this real food?

She approved of it all, and…

[please brace yourselves]

…she is eating.

She gradually showed more and more enthusiasm by opening her mouth wider, pulling my hand toward her mouth, chomping down on the finger that is feeding her, smiling and even laughing at each bite.

Behold~

 

 

By the end of this past week, she was eating as much as several tablespoons at a meal!  She is eating enough that we will have to adjust her diet to prevent her from gaining too much too fast!  We are praising God for this stunning progress!

 

Q:  I know you said that the doctors are thinking that she will need the tube for about a year (or more)… why are you not opting for a g-tube so she doesn’t have to have the tube down her throat?

A:  We knew beforehand that G-tube surgery might be unavoidable down the road, but after receiving strong encouragement and support from a doctor friend, we decided to give her a fighting chance to eat by mouth.  The type of feeding tube Katie is using is the same type we used for Verity.  It’s a thin, buttery-soft NJ tube being used as an NG tube and can be used long-term, being changed once a month.

We knew it could possibly interfere with her learning to eat, and we’re so thankful that it doesn’t seem to be hampering her desire or ability to take food by mouth.

 

Q:  What type of downs does Katie have? From her pictures she does not look like she has an extreme case? Is her diagnosis similar to Verity’s?

A:  I was so glad to see this question!  It provides me with a marvelous opportunity to dispel a few commonly-held myths!

I know my answer may look technical, and may tempt most eyes to glaze over, but if you are not already familiar with Down syndrome, I hope you take time at some point to digest this information.  If you do, thank you so much for being willing to learn!

~Down syndrome is like pregnancy in that you either have it or you don’t.  Most of us have the typical two copies of the twenty-first chromosome in every cell of our bodies.  Nearly all people with Down syndrome have three copies of their twenty-first chromosome in every cell of their bodies.  There is a relatively rare exception to this rule.  Mosaic Down syndrome affects some but not all the cells of the individual’s body.  Depending on which cells are affected, the individual could display very few characteristics of Down syndrome or, more commonly, be nearly indistinguishable from those with regular garden-variety Down syndrome.

~Not all people with Down syndrome have the same physical features.  There are distinctive physical features that are commonly present in individuals with Down syndrome.  But not all people with Down syndrome have every one of the features on that list.  And the features on that list can be found in the general population.  Katie’s karyotype, or the test which showed what her chromosomes look like, showed that she has Down syndrome.  Katie has some of the common features, but not all.

Verity’s karyotype showed that she has Down syndrome.  Verity also has some of the common features, but not all.

 

 

~There is a range of cognitive abilities among people with 47 chromosomes just like there is a range of cognitive abilities among people with 46 chromosomes.  The cognitive impairment of most people with Down syndrome will fall somewhere in the mild to moderate range.

 

~It is impossible to determine someone’s level of cognitive ability by the strength or weakness of their Down syndrome features.  The extent to which the common physical features are present in people with Down syndrome is entirely disconnected from their cognitive ability.  This means someone may have strong Down syndrome features and a mild cognitive impairment.  Someone else may have mild Down syndrome features with a moderate cognitive impairment.

It should go without saying, but unfortunately it cannot, that people with strong Down syndrome features and profound cognitive impairment have the same value in the eyes of their Creator as people with no Down syndrome features and gifted cognitive ability.

We think brains are overrated and love is underrated.

Just throwing that in there for good measure; we have no little experience with both.

 

 

Q:  Because she is so very tiny, do you know if she could have a form of dwarfism as well as Down syndrome?

A:  We know that she does not.

Katie’s condition was not caused by her special needs, it was caused by criminal neglect of her needs from the time of her birth.  She was placed in the orphanage and neglected because she was born with Down syndrome.

You may not have read enough of Katie’s story yet to know that there are other children in Katie’s former orphanage who are also very tiny due to lack of human contact and lack of sufficient nutrients, among other preventable causes.  Some of the other children have Down syndrome like Katie does, some have other diagnoses like cerebral palsy.  What they all have in common is not some rare diagnosis, it is the way they have been neglected.

One of the blog posts currently under construction will attempt to tread carefully through many more issues related to Katie’s former orphanage.

 

Q:  Have you found anything yet (besides music) that she seems interested in?

A:  Yes!  This will also be the subject of a future blog post, Lord willing!

She is unequivocably uninterested in Violet the talking puppy dog…

…and in her little pink, sparkly ball.

“Will someone please get this irritating thing…”

“…out of my sight?

 

Suggestion:  I think you need to add to the name of your blog to include the blessings and joys of your little sparrow.

Response:  If we ever change the name of the blog, the new name is ready and waiting, and is very different from its current name.  But we’re not quite ready to do that.

Did you know that the word “verity” is actually an English word?  It means “truth.”

…the blessing of truth…

 

Suggestion:  Oh, and I realize you have your own ideas of what you want to do with her hair, but I am making a plug for the length and style it is now.

Response:  We agree with you for many reasons.

By the end of this past week, it moppishly needed a trim.

Unfortunately, I tried to trim it myself so Katie didn’t have to be subjected to a hair salon.  EEEEEK!!!  Oh the distress!  Oh the unspeakable dismay that filled my maternal heart when I surveyed the results of my depredations!  How I regret it!!!  NEVER AGAIN!!!!

My few small consolations are as follows:  1) Katie tolerates my efforts to cover it up with hood, hat or hairbow.  2)  Uh, it no longer looks moppish.  3)  Hair GROWS!!!

The following photo was taken in response to a request that I provide some perspective on her size in relation to a known object.

Oh, you thought you would see a photo of the havoc I wreaked?

Nope.

Katie with hood on full size bed I~

 

Katie with hood on full size bed II~    

 

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43 Responses to “Caring for Katie: Q & A”

  1. Trish says:

    She’s eating… eating.  And taking pleasure in it. Oh Susanna, I cannot tell you how that makes my heart soar! Praise Him that can renew all things!

  2. Heather McFarland says:

    Such wonderful news…except for your hair cut story.  But don’t feel too bad, took my son to a salon yesterday, they didn’t do too great of a job either. :)  Thinking and praying for all of you throughout each day.  May God continue to bless you!

     

  3. Stephanie says:

    “We do all we can to eliminate unnecessary medical costs and pursue ways to lower legitimate medical costs.” – Could you pleeease share how you do this? I realize it isn’t exactely Katie-related, but I would really really like to know!

  4. Gail Kenyon says:

    Susanna, you crack me up sometimes!  (LOL)  Although she is cute with a hood on too!!!

  5. Debbie says:

    what a generous use of your time, to share so much information (and so many pictures!!) with us!  you do realize that even a spectacularly bad hair day could not dim your katie-bird’s beauty and spunk!  it is just as amazing to watch her personality develop as it is to see her body growing. 

  6. Valerie says:

    Thank you again for the newest blog, great info, great pictures (Verity and Katie’s matching outfits are too cute), and the love of Jesus that comes out in your every word. 

  7. Sandy Harris says:

    Thank you so much for sharing your story of Katy.  I love watching her grow and learning about your day to day life with her.  Thanks again for taking the time out of your busy life to let us in.

  8. Rachel says:

    as always, love all your pictures, but especially the one of katie and verity in matching outfits!  i just love seeing these two sisters together.  if you had to recommend one book on down syndrome, and one on adoption, which ones would you recommend?  thanks :)

  9. Emily says:

    I thought of Katie today in church when we sang ‘Majesty.’ The words are so true in her case, and in others. 

    Majesty, majesty, Your grace has found me just as I am, empty handed but alive in Your hands. Majesty, majesty, forever I am changed by Your love, in the presence of Your majesty.

  10. Tal says:

    I don’t know why, but when I look at the pictures it seems as though Katie has always been an integral part of your family. I think she is right where she belongs.

    On a slightly tangential note, I’d like to take a moment to compliment your eloquence. One post in particular caught my attention:

    “Our little Katie may never walk or talk or learn to eat properly. Right now, she is functioning on the level of a 3 month old. We have no guarantees that she will ever progress from that point. If she never does, we would not scorn her for it, or be disappointed in her, or consider it to be proof that no miracle has taken place, or that the adoption was a mistake. It will not make her less valuable as a human being. We are not adopting Katie in hopes that she will fulfill some need of our own. We consider it to be the privilege of a lifetime to be chosen and allowed to minister to Jesus Himself by ministering to this weak child. We fully understand that this perspective is the polar opposite of the utilitarian view that judges human beings by what they can do for us in monetary or otherwise measurable terms. We do not measure our children’s value by how smart or skilled or strong they are, and we never will. This ugly thinking is based on a lie, and we reject it.”

    This is precisely the sentiment I have been seeking to express in words I would have probably never found. Despite all that she has endured, Katie clearly displays preferences and the ability to enjoy her life (or suffer, as it were). However, too many people are entirely indifferent to this fact.

    I read an article not too long ago that really bothered me. It talked about how researchers were coming up with more advanced methods of “preventing” Down Syndrome. Uh…what? Did I miss something? Last time I checked, there was no cure for Down Syndrome. However, one can “prevent” people with Down Syndrome, because the fact is that there is only one Katie, for example. Katie has Down Syndrome. There is no Katie without Down Syndrome. To say that she is “preventable” is one of the most pathetic, vile sentiments I can imagine.

    I was so impressed with your words that I actually shared them with a friend of mine who has cerebral palsy. The horrific abuse of people with disabilities scares and repulses him, and rightfully so. I have shown him the images and he has responded with (to paraphrase) “had I been born there, they would have gotten rid of me.” And yet he is in college, expresses himself better than I in most cases, and works. I don’t think people stop to think about the implications of “preventing” people with “inconvenient” needs. Where does it stop? Is being elderly too inconvenient? Is suffering a head injury too inconvenient? How would they like to be discarded if it were to be decided that their needs were just too much to bother with?

    Sorry for the long post…I had been wanting to thank you for those words for a while now.

    Wishing you all the best and a wonderful holiday,

    T.Z.

  11. Fiona says:

    I had to chuckle at the hair disaster, having had one of those myself recently. I think, for the record, she would suit just about any hair cut, she is so beautiful.
    Your blog post moved me so much, as usual.

  12. Anna T says:

    You are making me laugh with your hair comments!!  What GREAT news that she is eating (from your finger — yea!!)!!  Praying for continued wisdom for her medical team and also for you!!  Prayers and ((hugs))!! 

  13. Kristina and Family of 4! says:

    Katie is so CUTE!!

  14. Love the Q & A and still cracking up on the hoodie.  It will grow!  LOL

  15. Susan says:

    I’m glad to see that the little red hooded outfit arrived – and that it came in handy after the, um, “revised” hairstyle!

    Katie just gets cuter and cuter – love her enthusiastic response to the yummy treats. As for me, it’s a truly delicious treat to get to keep up with her progress, thanks to your blog and the wonderful photos.

  16. Susanna says:

    Susan, your thank you note, my dear, is on its way! :):):)

  17. Jae says:

    I certainly appreciate the care you take in composing each post! I don’t think you should change the blog title, personally. A.) Because I love how Verity’s name means Truth, and as you pointed out the blog title also doubles as “The Blessing of Truth” and how fitting! and B.) because is it true that had Verity not come into your lives, you wouldn’t have found Katerina? What a blessing Miss Verity has been indeed! But that is my personal opinion on the blog title. I happen to love the url and name of your blog. Maybe a blog theme redesign will appease the requests to include Katie in the title. :-) (perhaps with tabs to FAQ’s and background info for new readers, I’d be more than happy to help with something like this in the future should you happen to ever want it! feel free to email me)
     
    I would personally love to see little Miss Katie with long braids like her sisters some day in the future! :-) 
    Lastly, I am so happy to hear she doesn’t seem to have an aversion to eating by mouth! How amazing it must be for her to experience all these new tastes! I’m so happy she enjoys it!! She is making such huge strides in such little time! She was just waiting for her chance to be who God made her to be! I am so grateful for your family.

  18. Idelle says:

    Your story has made a difference in my life.

    An extraordinary difference.

    I was raised in a family that was not religious–at all. I have always identified as an athiest. I was content, secure and never felt “better than” or “worse than” anyone. I respected and admired those who had a belief in God.

    Yet I did not believe myself.

    Then, about a week ago, I found your website. I started reading from the very first entry.

    The love of your family, the unbridled acceptance of others, the passion, the compassion…it truly “spoke” to me.

    As the Life of Katie was being written, I read things that I could not attribute to simple human interfearance.

    I knew, just as my heart beats, that *something* was helping.

    I picked up a bible for a reason other than reading it from a ‘scholarly” view.

    And now, now I am searching for a church.

    It’s difficult. I am a former athiest, and have no clue what I will find.

    But for this website, your family and the story of Katie…I’d still be lost.

    Thank you, thank you for letting me be found,

    Idelle.

  19. Lara Font says:

    absolutely fantastic pics!  Love those girls!  and Verity looks like such a big girl now  :)  XO my friend!

  20. Carolyn says:

    This post made me smile: Katie is eating! and smile again: Katie and Verity in matching sweaters! and smile again: Katie on big brother’s lap! But the really big smile was that I read the following post, about the equipment you had received, before I read the post about the need.  Very wonderful, fast answers God Who Provides!

  21. Rosemary says:

    Well, I, for one, would love to see you use an alternate title, since you already have one ready — but I would like to see it on the cover of a book about Miss Verity and Miss Katy! I am sure the best of the blog would become a best-seller — so heartening, so informative, so Godly, so true. :) Merry Christmas to all of you.

  22. Amy says:

    Simply beautiful.
    Love, the Boroughs

  23. Katie says:

    I have a question that doesn’t have anything to do with Katie, but Verity…What was her birth stats? Weight/length… Still praying for your whole family.  Katie is really putting on the pounds!!!!  She is looking amazing.  

  24. kate says:

    Thanks for the response! I do know that Verity means “truth”. And Katie means “pure”. ;>
    It wasn’t a criticism. I have so many people who tell me how lucky my daughter is, what a blessing I am to her…and *I* am the one who feels blessed and honored and humbled and grateful to have been used in her life.
    It’s your blog and you should call it whatever you want! My comment was just my way of saying that while I know Katie is blessed to have a family who adores her at long last, it is clear that she is also a blessing–to so many people. I’ll bow out now.

  25. Susanna says:

    Oh my goodness, Kate, I didn’t at ALL take your kind suggestion as a criticism! Dear me! Just didn’t want to be rude and ignore you rather than explaining what our current thinking was on the subject. Hope this makes sense!

  26. Susanna says:

    Idelle, I am struck speechless at the GOODNESS of the Lord.

  27. Tammi says:

    Me too…again!

  28. Holly says:

    I LOVE these updates and Q and A!!  I LOVE Katie’s joy!  I LOVE Katie’s propped “head on hand” position.  It is just the cutest thing!  I LOVE Katie and Verity’s matching outfits.  I LOVE Katie being held by her brother!

    Among the moms that read adoption blogs, all we say is “Verity” or “Little Katie” and we all know which family and blog the other is talking about!    Y’all are popular enough to have a one/two word name…lol.  ;) 

    Thank you for so clearly explaining Down syndrome.  I saw the original question and wanted to answer it myself but knew you would get around to it.  It is a common misconception but as long as people are willing to learn, most parents are definitely willing to teach! 

    I’m so HAPPY that Katie is beginning to enjoy food!!  What a blessing!  Regarding the haircut, I’ve been there so many times!  lol.  Trying to save money and then needing to go to a salon so that there can be some kind of style.   Katie looks adorable no matter what! And oh, how Verity just warms my heart.  My son Trent (3, has Ds) kisses the screen every time he is sitting with me while I look at their photos.

  29. Cristina says:

    I love reading the updates and seeing how far Katie has come!  The difference in how she looks and how connected she is in the picture from the orphanage and the recent pictures of her are amazing!!!  I wanted to respond to the question about the NG tube and why you chose to not have a G tube placed.  I have had an NG tube in for periods of time (not longer than 2-3 weeks at a time I think although I honestly don’t remember, I’ve had them multiple times for varying lengths of time) and it honestly did not bother me most of the time.  Just like anything else you get used to it and forget it is there for the most part.  What bothered me most was not the tube in my throat but rather the tube right where it went into my nose and the tape on my face.  I just thought I’d share my experience since it sounded like people were concerned that the tube down her throat would be irritating.  Granted, different people have different experiences but for me it really wasn’t annoying and I got used to it very quickly.  On the other hand, I have a tube that is like a G tube but slightly different and it irritates me much more than an NG tube ever did.  Thank you so much for sharing about Katie!  It brings a smile to my face every time I see how much progress she is making and how much love surrounds her.  Such a big change from what her life was like in the orphanage.  I pray she continues to make progress in the months to come. 
    Cristina

  30. Amy says:

    It makes my heart leap with joy everytime I hear news of Katie and your beautiful family. I did get your list from Amy B and we are getting our referral officially on Monday!!! Off to Bulgaria in about 4 weeks!!!

  31. Rachel M says:

    Susanna I am overwhelmed and stand amazed at the goodness of the Lord. Idelle, I lack the words to express what I felt reading your post. Glory to God in the highest!

  32. April (justonemorebaby) says:

    PICTURES AGAIN! :D you have no idea how she makes my heart smile. Thank you.

  33. Ginny says:

    Katie looked more genuinely thrilled after her meal than most of us would after an expensive meal in a fine restaurant.  I think we should all take a lesson from her!  It is truly a blessing from the Lord – and a miracle – that she is responding so well to your loving care.  Underneath that neglected child in the orphanage was a beautiful girl.  Her beauty amazes me, especially those eyelashes!  
    I have never had any experience with Down Syndrome, so I’m thankful for all the information you are sharing.  It’s not the scary diagnosis that it’s made out to be, but then things have changed in the half century I’ve been alive. 
    I pray your family has a blessed celebration of our Lord’s birth.  Do you do anything special, have any family traditions?
     

  34. Holly says:

    I forgot to mention that G-tube can have a host of problems.  Although my son has only had a NG tube, my career puts me in contact with children with G-tubes.  Infections at the entry site are common and it can become clogged or dislodged.  A dislodged G-tube is a bigger deal than a pulled NG tube, which as you mentioned previously Susanna, is easy to replace.  Both have their pros and cons but all things considered, I would prefer the NG-tube over the G-tube anytime.

  35. Bethany Garcia says:

    Hello,  i love your blog and hope to get my husband to read it. i want to adopta special needs child more than i can say. it is a deep yearning within my soul. my husband is very hesitant.. not about adoption, but more about the special needs. We have  been married for just over a year, and i got pregnant three months after we were married. i just had a beautiful and healthy baby girl. my first, my husband’s fourth, he has three from a previous marriage. i adore all four of them. i am not sure why, but i thought once we had our baby and had her constantly, not back and forth, my desire to adopt would lessen. it hasn’t. if anything it has grown. i just pray. pray for my husband, pray for our family, for orphan children, etc. we had a plan to become financially stable and look more into adoption in four years. well, my husband lost his job, and hasn’t had so much as an interview, dispite the hundreds of applications sent out. we live in a two bedroom apartment with between 1 and 4 kids, depending on the week.  currently we are living by the grace of God as our total monthly income is less than six hundred dollars. and still my heart burns and breaks for these children. i thank you for your blog and for your time and commitment. someday i pray i will be in a place to adopt like your family has. until then, i continue to pray for those who can and the children who need and those children out there who will someday be gifted to our family. i thank God for you and your family and all that you do. i love seeing your daughter’s grow. i love that you prove there is always hope. it is never hopeless, too late or pointless. God bless you and yours. Love, Bethany 

  36. blackhuff says:

    She is so adorable and I am ecstatically happy that she is eating food from the spoon. That is so wonderful. 

  37. Rita in Spain says:

    Thanks you for enlightening me about DS….It was very interesting to read…
    And as always in awe of the changes taking place with Katie…..I am so profoundly happy for her and your family.
    Btw, Could Verity be ANY cuter?????

  38. Sharon says:

    Hi Susanna,  I just found your blog a few weeks ago.  I LOVE it; you write so well.  Katie’s story is awe-inspiring.  I can’t wait to see God’s plan for her develop.  I have a feeling she is going exceed every doctors’ expectations! 

    I’m wondering how much mobility she currently has?  She pushes herself up very well; I assume she can roll front to back/back to front?  Is she scooting at all?  Sitting at all?

    Thank you for blogging about her progress and sharing so many photos.  As you can see, it is a blessing to many, many people!

  39. Molly says:

    That sweet girl is something special! You can see in her eyes that she is “with it”. I don’t care if she never utters a word. That girl is making big waves in the world!
    Also, there’s nothing better than snuggling Reece’s Rainbow babies. I want to come visit!!!!! (totally have dibs on babysitting!)

  40. Katherine Lauer says:

    I burst into tears to read the list of foods Katie has tried and that she’s eating several tablespoons. Truly, the wonders are not ceasing. God is so good and we are so undeserving! I just wonder what it feels like to be nine years old and never have tasted those delicious foods before–what joy and wonder she must feel!

  41. Deirdre says:

    I heard about your blog from my friend, Amanda.  Thank you for sharing all that God is doing in your lives.  I too am a mommy of several including a few adopted with special needs.  Our littlest one  (birth baby born in April) we named…..Susanna!

  42. Tami Swaim says:

    I did not have time to read all the comments so perhaps you got oodles of offers already but I offer my assistance to cut Katie’s hair next time she needs a trim for the following reasons:  I have always cut my own hair.  I like to cut hair.  I usually only get to cut boys hair, lots of little boys hair and love a chance to cut female hair HA.  Also, my son with extreme sensory issues has given me LOTS of practice cutting hair to someone who detests the process.  He happens to have the thickest and hardest of all hair in my family to cut so far.  Oh, and one great plus reason is that I live close by to  your home!  I could never step foot into a barber salon with Joel so I know how you feel about that.  I’ll wait to “hair” from you!! tee hee…..

  43. Carolyn says:

    This is my second comment but it is more of a question: I know from your blog that you are a reading family, have you tried reading to Katie yet?

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