Saturday, May 21, 2016

Family Updates

Sand cherry blooms
Thank you so much, for all of the emails, calls and comments, of prayers and encouragement, for our family over the last many months.  With such a large family, we always seem to have a few pretty serious things going on and always appreciate being held up in prayer.  Thank you and Gods many blessings upon you all for it.

I am going to do one big update post, to answer some of the asked questions and will start with Tim.  He was diagnosed with stage three kidney failure several months ago.  His second blood work showed a bit of improvement.  He has been on medication to neutralize his blood acids to make it easier on his kidneys and is on a VERY restrictive diet.  The diet has upset his Addison's Disease quite a bit but seems to be leveling out again.  He had an appointment with his kidney doctor recently and Glory to God his kidney numbers continue to improve.  He is now one point away from being moved from the critical stage three to stage two.  We are very excited and praise God for this improvement.  The doctor does not want him to change anything he is doing right now, to try to get even better numbers.  The bad thing is, Tim has lost a huge amount of weight and is very thin and tired all the time now, even weak, if he does to much.  If he is moved to stage 2 failure, he will be allowed to eat a lot more foods, with more calories in them and it will greatly benefit his weight issues.  Please pray that Tim;s kidneys will continue to improve, he will gain in strength and energy and will put some much  needed weight back on.  He is still able to work and drive.  I try to have everything done around here when he gets home from work, so he has little to do but relax and enjoy the family.  God is so good and we are so excited about the improvement in numbers.

Our son Stephen is doing very well.  He has lived in an apartment since moving out on his own eight years ago.  He has decided he would like to move this year and buy a condo or small home.  He has been sending me many links of homes he is considering and it has been fun to go over some of them with him.  He should be moving to his own home very soon!

Antonio is doing well.  He had the botox reaction ten months ago now.  He was paralyzed for several months from it and has had reoccurring issues from it all.  He will do well for three weeks or so and then relapse.  Praise God he has had no major episodes in the last two months.  He is still not back to how he was before the botox poisoning so we are beginning to think this is Antonio's new normal.  He sleeps during the day a lot more than he did.  He is also  not as strong as he was.  He is still a happy young man but has many days at a time we do not see his huge smile, is quite and not as talkative as he has always been.  All in all we are so grateful to be over the horrible regression episodes and thank God that Antonio is ok and doing better in his health now.

William is still going to the local college GED program.  He has completed and passed three sections!  Only math to go!  He is still having health issues.  We finally had his genetics appointment that we waited almost a year for.  He will now begin a long series of test to try to get to the bottom of it all.  We are so grateful.  It will hopefully get us the diagnosis and help we need for him.

Carolyn is doing very well.  She is busy with ballet, helping me, doing schooling and trying to learn to crochet.  She is still my right hand girl and such a big help with the little ones.  She loves working with them and is so good at it.  They all love her as well.  Her new little dog, Bella, is doing well and brings her great happiness.

Zeke is doing very well in school.  His behavior has been a bit erratic at home, from so much back and forth to school and lack of routine while there but he has behaved well at school so I cant complain.  He participated in the local Special Olympics this year and went to the dance afterwards.  He was so excited about it and did great.  He got three ribbons, One second place and two third place.
 
Elizabeth is doing very well with her home schooling this year.  We changed a lot with her schooling this year and Praise God it has been a good fit for her.  She has for the first time finished her whole math book for the year and is accomplishing a lot of work each week.  She is nervous about her up and coming surgery as she has not had a surgery since she was eight.  She does not remember what it is like to go through a surgery and recovery.  We are making every concession to prepare her and make her feel comfortable with it as we can.

Billy loves dill pickles.  Tim found this huge dill pickle and got it for him as a surprise.  This is his sour pickle smile.  :)
Billy is doing very well.  He still struggles with his behavior and being nice to others but over all he is much improved.  He was recently discharged from Physical therapy, occupational therapy and feeding therapy!  I never thought we would get to the day he would self feed but here we are!  He is feeding himself with verbal promps, to keep putting food in his mouth and to keep chewing.  I no longer have to feed him every bite, every meal!  He is a very smart little guy and doing well with our home schooling.  He is a joy to teach and I love the deep, well thought out questions that he asks, all day long.  He is never still and rarely quiet!

Timothy is also doing well with is feeding and has been discharged from feeding therapy.  I think because he was younger when he came here, that he started self feeding faster and I don't have to remind him to chew all the time.  He will need PT and OT therapy for a good bit longer as he has autism and far from where he should be in those areas.  He has started to put several words together and is paying more attention to the world around him.  I recently had to put him back on the dairy free/wheat free diet because of his behaviors and now he has settled down again.

Kinsley is doing very well.  She was tested a few months ago and tested as a two and a half year old and she was not even two yet!  She is very smart but has almost no words to communicate with.   Language is very hard for her.  She understands everything we say but speaks to us in sign language.  She is progressing in language but it is very slow going.  She can say ma ma, da da, Peppa, Blue and she just started saying up and purple.  She is having to memorize every word individually, which will take time.  She will be starting vision therapy soon, to help her learn to navigate her world, with her vision issues.  She is still in PT, OT and speech therapy and will be in them for a while.

Please keep my health in your prayers as well.  God is so good and I believe He has a plan for us and for our future, to bring us peace and not evil, to bring us an expected end.

May the Lord God of Israel, Maker of heaven and earth and all that is there in, pour out his abundant blessing upon you as you live and grow in Him.

Jeremiah 29:11  For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.



Blessings,

susan

Saturday, May 7, 2016

She's Two!!

Yes, we have had a lot of birthdays lately.  :)  Our four girls all have their birthdays within three weeks of each other!  It is a three week pink for all.  :)

Sooooo...Happy birthday to our little, miracle girl...Kinsley!

I did not know if God would ever bless me with the experience of having an infant again.  He did!

All children are a true blessing from the Lord.  I can not tell you what a huge blessing Kinsley has been to all of us, in our home.  She came to us as a little baby who could hardly even move or see.

She has optic nerve hypoplasia and is missing optic nerves in both eyes.  Her eyes roved back and forth all her waking hours. (nystagmus)  She could not bring her eyes together and track.  She did not respond to light and dark and would not look at anything.  If you brought your hand up close to her eyes, she did not even blink or close them, in a protection response.  Bless her heart.
We soon learned she also had hypoplasia of the corpus collosum (was missing part of the brain bridge between the two half's)  and had hypotonic cerebral palsy.  We prayed and prayed over her and God began to move in big ways for her.  She could not coordinate any of her body movements at all and had to be taught repetitively, all the patterns for rolling over, reaching out, bringing her hands together, holding a toy.. just every skill she needed, had to be taught repetitively.  Hand over hand, all day long, to assist her to learn it and find a place in her brain to retain it and use it.  God helped her and she did.  Every so slowly...she did.

Slowly, she started to bring her eyes together and started to focus on things.  The nystagmus went away.  Slowly she held toys and would look at us and smile.

She is so sweet and gentle natured, everyone loves her.

She had trouble reaching and getting to toys, so I would sit her in the laundry basket and fill it full of toys, so she just had to scoop with her arms and hands to try to get them.

She had so many feeding issues but God helped her conquer them as well.

Ever so slowly, by the grace of God she has blossomed.

She has a very hard time speaking and learning words.  She is going to have to memorize every word she ever says, individually.  She uses mostly sign language but only has a few words still to this day.  But...she test out, cognitively, more than six months ahead of her age.  She stated to potty train herself at a year and a half old.

She knows all her colors and likes to sort, organize and do puzzles.

She loves to dance and thinks she is such a big girl but still takes an occasional nap.

She is growing up fast.

A very girly girl!

She loves watching Blues Clues and Peppa Pig.  She wanted a Peppa cake this year, so my wonderful sister did her thing and made Kinsley her dream cake!  Thank you Aunt "S"

Happy Birthday to our little, sweetest, miracle princess!

All the Glory to God!

May God continue to do a miracle for you in your life and bring it to completion. May you love and serve Him all the days of your life!

James 1:17-18  Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.  Of his own will begat he us with the word of truth, that we should be a kind of firstfruits of his creatures.



Love Dad, mom, Stephen, Antonio, William, Carolyn, Zeke, Elizabeth, Billy, Timothy and baby "A"












God has done a great work in her.