Sep 28, 2010

Getting to Know Jacob

I know many of you know the story of Manny ... but you might not know the story of Jacob. So I'll start at the beginning and end up with today's news.

Jacob was born July 7, 1998 a wee bit early and drug addicted. His birthmother gave birth to him at home and took him to the hospital and said she wanted him to be adopted. 18 months later, we met him and knew he was our son. He could barely walk (always on tiptoes), didn't talk and wouldn't look you in the eye. He acted like he was deaf even.

After many, many, MANY Miracles, Jacob learned to talk. It was discovered much later that he is on the autistic spectrum, some say Asperger's Syndrome. He's a hilarious, gentle giant. At just 12, he's already 5'8", 135 pounds, wears a size men's 11 shoe (like Daddy). He loves to read - he has a photographic memory! And this year he is in 6th grade (homeschooled).

On his 12 year check up, the doc ran a routine urinalysis and it came back with problems. Long story short - many urine tests and blood tests later ... still problems. So we were sent to the Nephrologist. And that takes us to today.

Kidney ultrasound showed 2 anatomically normal, functioning kidneys. (Good news.) And then the Nephrologist proceeded to explain the test results (which she had already studied). "The lab results are highly concerning."

Basically you should have 30 or less parts of protein in your urine. 100 is a problem. His is almost 3800. By itself, it's still not a huge deal. But his blood tests show he has basically no protein in his body (which explains why he is weak, tired a lot, fatigues easily, and is losing weight rapidly). So it shows his kidneys are working over time. Secondly, his liver is trying to help out ... thus his cholesterol of 294. It's not a true choleserol like you usually think of it but a byproduct of the kidneys not filtering correctly and the liver working over time too.

Anyway ... all together this is called "Nephrotic Syndrome". But there are several types. Some that are relatively mild and respond well to treatment. One that doesn't.

So given his age, gender and race, there is one likely suspect of what is causing this ... and the doc (who has been a Pediatric Nephrologist for 30 years) suspects it's the one that doesn't respond well to treatment. But she kept saying ... we won't know until the biopsy.

Which is the next step. It was too late today to schedule it so we'll call tomorrow ... she wants it done next week. It's a one night in the hospital stay with results in about 1-2 weeks.

Once we get those, we'll know if/what the treatment plan is. If it's the one she suspects, she went on to tell me that End Stage Complete Renal Failure is in about 5 years (give or take) before transplant. NOT words you want to hear about your precious little boy.

In the meantime, we're asking for all the prayer warriors to rally the troups. God has saved this little guy more than once and we KNOW He is going to do it again!! So thanks for joining us in prayer. In fact, as we heard the news, THAT was the first thing Jacob asked ... "Can you tell everyone the news so they can pray for me?" So I'm doing just that!

Sep 25, 2010

The Zoe House ... Vision

History:  Zoe (now 5) was born in Taiyuan, Shanxi and when we went to adopt her, I knew I was going to have to go back and help some of the orphans "left behind".  So I started a project "SHOES" (stood for Sharing Hope for Orphans and Every Soul).  We took shoes, socks, clothes, medical supplies, school supplies, etc.  and delivered them to that orphanage as well as surrounding areas. 

In the process of doing that, I found favor with the orphanage director and some other governmental officials.  A relationship was born.  Maybe I can post some links to some of our trip blogs one of these days. 

The last trip over was in November 2009 and we came home knowing we wanted to start the Zoe House, a foster group medical home.  We already have some staff who are ready to come on board.  Then some developments happened in my life (aka Manny) among other things and we put things on temporary hold. 

CURRENT:  We are back in full swing, ready to get this home up and running.  Many, many things need to come together.  But the basic vision is this ... take (mostly) newborns who have severe craniofacial abnormalities.  Put them in our group medical home.  Give them the proper nutrition, medical care, surgeries, etc. necessary.  Once they are stable, they will go to live in a local foster home.  And once the paperwork is done, be adopted. 

Why Craniofacial?  The needs are so huge, you pretty much have to "specialize" so the caretakers become experts in caring for a certain need.  The relationships with the doctors and hospitals are also important.  Craniofacial is one of the most common special needs.  These babies are also very time consuming to feed so they often do not get the proper nutrition in typical settings and many die as a result.  And finally, I have developed a relationship with several great craniofacial surgeon teams who are willing to go over and do some surgeries on mission trips. 

What types?  While cleft lip and palate is the most common special need in the world, it is also one that has a lot of medical teams who help perform these surgeries.  So yes, we will have babies with cleft issues.  But we're really wanting to take the babies with the more complex issues.  The ones who would die without specialized care. 

Where will the home be?  Because of the wonderful medical facilities and great access, we are looking to put the Zoe House just outside of Beijing. 

What will the home be like?  We are currently having a person look for areas as well as types of housing, cost of housing, etc.  We are open to several scenarios.  But our initial thoughts are a first or second floor of an apartment building or a home.  We envision 3-5 bedroom home.  This way we could take up to about 10-15 children before we would need to expand. 

What can you do to help?  Oh ... where to start.  Basically everything.  Funding is our first hurdle.  We are eventually going to do the "sponsor a baby" like most of the organizations do.  But until babies are in the home, we have to do it another way.  So we're brainstorming ideas right now.  Grants, corporate matching, corporate donations, etc. are high on our list of needs.  We also need a database person to help us design and run a database for all the info that will be coming in on both sides of the world.  More needs to be posted soon. 

Why have we named it the Zoe House?  Zoe means life.  Can't think of a better name than "Life" for children who would likely die if it wasn't for this home. 

So basically ... we're at the bottom floor of a grand new adventure.  I cannot wait for the chance to post the first picture of the first baby in the home. 

Sep 16, 2010

Still sick

Last Friday we went to the Doctor who sent us to the ER for chest xrays.  Sent us home with meds. 

Since then, baby is doing better but not well.  He keeps running a small fever.  He has a horrible cough.  He is having a difficult time breathing at night - the mucus collects and he chokes.  It can't go up or down, just stuck in his airway.  This happens several times a night.  It scares him (and me) and then he is awake for a while screaming mad/scared.  Repeat.  Exhausting. 

What's cool, though .. is that he is able to cough!  That's huge.  During the day especially he can get that gunk up and it won't settle as pneumonia. 

This morning we went to the Pulmonologist and he gave him yet another medicine to help open his airways.  But said he still doesn't have pneumonia!  Yippee!! 

I asked him about the sleep study (up until now, I've only heard the nurse's interpretation of it) and he said, "Normal.  Well, not normal.  But for a baby as floppy as he is, this is IMPRESSIVELY normal.  Way better than we would have expected!" 

He also wants the baby to have a genetic test done.  He sees some facial characteristics that might show what he has.  He wants the Pediatrician to do it since I see her more often and have a great relationship with her.  I won't tell you what he is suspecting, but let's just say if so, it's a dramatically different outcome of prognosis than the one he has now.  He is in complete agreement that we NEED to know what he has since it impacts treatment plans.  He also suggested a geneticist. 

So ... tomorrow I see Dr. Baldwin (our Pediatrician) and we will be discussing all this. 

In the meantime, Dan has been hit hard by what we are guessing is allergies.  He sounds horrible.  Sore throat, bad cough.  He's exhausted.  He's been sleeping in the guest room for over a week now since the baby is waking up so much (no need for us to both be zombies). 

And with Jacob - the Nephrologist ordered 3 more type of tests before we see him.  I think we'll have the results of those tomorrow as well.  The great news is that he feels Jacob CAN wait until October for the appointment.  That's great because the Pediatrician thought this was too serious to wait that long.  So I'll take any bit of good news I can get. 

Sep 11, 2010

Teaching My Kids to Always Remember

This is the story I told my kids today:  9 years ago today I was doing laundry.  Daddy calls and says to turn on the news and I saw an airplane had just hit into a building.  No one was sure what happened but as we watched, a second airplane hit the next building over.  We knew it was no accident.

Everyone in those buildings were trying to get out quickly.  Firefighters and Policemen were rushing in to help.  Many people got out.  When all of a sudden, one of the buildings crashed!  Many people were still inside, mostly police and firemen.  Then the second building crashed killing more people. We couldn't believe what happened. 

Eventually, another airplane hit the Pentagon.  And one crashed in a field. 

Later we found out more of the story.  President Bush ordered no new planes were to leave the ground.  Pilots were told of the hijackings of the planes and secured their airplanes.  We will never know how many lives were saved that day by that decision and many others we do not know about.

But I want you to remember 2 things: 

There were many, many heroes that day.  Many people risked their own lives to help others live.  Firefighters and police officers.  But also regular people who made sure people were safe.  And that plane that crashed in the field?  We later found out it's because the people on the plane knew it was hijacked, that it was headed to kill lots of people on the ground and they knew they were going to die.  But the made sure to crash that plane where no one on the ground would be hurt. 

The other thing to remember is that ... many people died that day but it could have been much worse.  The pentagon ... the plane crashed in one of the few unoccupied sections.  The planes hit early in the day before everyone was at work.  The planes hit high so many got out.  It was the first day of school in New York so many people were late to work that day taking their kids to school.  And many, many other miracles. 


Then the kids asked where THEY were that day.  Jacob was 3, Kaley was almost 2.  And Sam ... I got a phone call about him that day.  He was born on August 31 so he was just 11 days old.  During the middle of this horrible, horrible day ... I got a call about a little baby needing a home.  I will never forget this day for many reasons. 

But mostly I choose to see the Heroes and the Miracles. 

God Bless America!!

Manny escapes the hospital again

Ironic how the last post was about how much better Manny is doing and this one is about how sick he is.  They are both true. 

Better because doctors are now thinking of a Life Plan for him. 

But he's still a very sick little boy who gets BIG sick easily. 

This lastes came on very suddenly.  Wedneday night he didn't sleep well, crying a lot and we have no clue why.  By the time he woke up Thursday, he had a small cough.  Through the day his cough got a bit worse but nothing horrible.  We did the shaky vest and breathing treatments every 4 hours to help.  Through the night Thursday night, it got bad.  BAD. 

He had a mild fever.  His heart rate was going and staying above 200 for long periods of time (and that was asleep, while on oxygen).  His little body was working HARD!  For perspective, his heart rate should be around 100.  Dangerous over 180 we're told. 

Meanwhile, his oxygen levels kept dropping too.  Crank up the oxygen ... no effect.  Long night. 

He woke up Friday about 9am and he was 104.2 fever.  90 o2 sats and 200 plus heart rate.  Called for a doctor appointment and they couldn't get me in until 4pm.  I went with that because she and I are both trying to keep him out of the hospital where he always gets worse and I have virtually all the equipment at home that they have.  (Later I found out the doc was NOT happy that the staff didn't squeeze him in sooner and that won't happen again.) 

Through the day, he seemed to be improving.  Not a lot, but subtle.  Like his pulse was hanging around 180, etc.  So I felt safe in waiting. 

4 pm doctor's appointment ended at 6:15.  She tried several things in the office but felt he had double pneumonia and would need a chest xray and blood workup, likely even stay the night.  I put out prayer requests. 

Doctor saw some mild pneumonia but not horrible on both sides.  Saw a mild ear infection on both sides.  He stopped doing all signs of respiratory distress.  ER doc said he thought Manny was in good hands with me and let me go home after one round of IV antibiotics. 

Dan slept in the guest room so I could doctor Manny up all night.  He slept all propped up right next to me in my big King sized bed.  He desatted many, many times but would always come back up to 93 or so.  Couple doses of Tylenol and Motrin.  Rounds of albuterol and pulmicort. 

It's 10:05 as I type this and he's still asleep.  Fever is 102, O2 level is 94.  When you cough all night and you're as sick as he is ... you need a lot of sleep. This same exact illness with any of the other kids would be "nothing".  But his weakened muscles make it so hard on him. 

I'm so thrilled to have slept in my own bed last night and not at the hospital.  I'm so very thankful my baby seems to be on the mend (still very sick, but not lifethreatening).  I'm thankful for friends who stand with us in prayer ... even though we call on them often. 

Sep 9, 2010

Thanks for your prayers (by Dan)

Hello Everyone,

For those of you who have been praying for Manny: first of all, thank you!! We need to give you an update so that God gets the glory He is due in this.

Most of you know how Manny came to us, how we then adopted him and took on his medical challenges with resolve that he would not only survive, but be "normal" eventually. You were with us in your prayers as he often came close to flat lining. His breathing would stop; have heart problems; he would seem to have seizures; his systems would seem to shut down and we would often rush him to the emergency room to get him revived again. Back in May the doctors ran tests on Manny and determined that he likely had this fatal disease, and said he had only about 1-6 months left to live:

Leukodystrophy refers to a group of disorders characterized by progressive degeneration of the white matter of the brain. The leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, from which the white matter of the brain takes its color, is a complex substance made up of at least ten different chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls the production or metabolism of one (and only one) of the component molecules of myelin.

The word leukodystrophy comes from the Greek roots leuko, white, dys, lack of, and troph, growth. Thus leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter.

Thank God for the medical profession and giving doctors the technology to diagnose things like this/provide help. But how many of you understand that there are certain diseases that doctors can not fix? God has the final say so. The doctors told us to prepare for the end and just make the baby comfortable in the time he has remaining. Its over. And when they gave us this heart-breaking report, we understood that they were just doing their job. After receiving this diagnosis, you joined your faith with ours and we have all been praying that God intervene, even though we were bracing ourselves for whatever God might decide.

Well, let me say this carefully and as accurately as possible: Manny still has some major hurdles to overcome. He still eats through a tube in his tummy, still gets an oxygen tube while sleeping at night, still has episodes when he seems to stop breathing or chokes. His head, arms and legs still mostly hang limp.

But here is the praise report. He is making so much progress each day, and NOT going backwards like the diagnosis predicts, that we have gone back to the doctor, and with their agreement, had him removed from the "terminal" diagnosis. Now instead of making him comfortable until he dies, we are going down a different path of how do we help him improve. His feet and hands are showing more and more movement. His voice is getting stronger and with more words now. His head movements are strong as is his hand grip. His mind is getting sharper, and not regressing like it was supposed to. He was on Palliative care (meaning only make him comfortable) and now he is on Therapeutic care (meaning how can we make his life as best as possible). Beth says it like this, "Before we had to make plans for his death with funeral, DNR, etc. And now the doctors are making a Life Plan!"

So Yay God!!! Thank you Jesus!! Lord you are good, and your mercy endures forever!!

Again -- please continue to pray for Manny. He is a still a quadriplegic who eats through a feeding tube in his stomach and has serious trouble breathing at times. (He kept us up most of the night last night screaming out in pain, and we could not locate where the pain was coming from, for example.)

But Beth and I believe that we have turned a major corner here recently. The miracle here, again, is that he is no longer Terminal. This is a medical surprise...but not a faith surprise. We thought you needed to know. Some have been praying very consistently and hard for this little guy. We wanted to thank you [Manny thanks you too] and tell you that your prayers DID make a difference. And going forward, lets just come into agreement in faith for a total and complete healing. Thank you Jesus!

Love you,

Dan Gore & Family

Sep 8, 2010

Mixed news

I'll go down the list one at a time.

1)  Sam (9) had a hearing test with his check up during summer and he "failed" it in one ear because of fluid in that ear.  We'd been doing a lot of swimming so we thought it was just that.  Small ear infection.  Antibiotics.  Thought we were all good.  Went back today and there is still fluid so more antibiotics.  Not a huge deal,  just strange that it's not cleared up yet.

2)  Kaley (almost 11) failed her hearing test in both ears during summer - also due to fluids we thought.  Antibiotics.  Today, her ears look PERFECT!  No wax, nothing.  Yet her hearing is now worse.  Both are in the "failed" category.  But her left ear is basically hearing nothing.  She's been saying, "It feels plugged up."  No pain.  Just hearing loss.  We're getting an appointment for the audiologist soon to do a formal test to see what she can/cannot hear and what is going on.

3)  Jacob (12) has the worst report of all.  He had a routine urinalysis which showed proteinuria.  Since then, we've run numerous tests and they all seem to point to something wrong with his kidneys.  Today we got the results of some very specific tests and the news is not good.  We have an appointment to see the Nephrologist soon ... the soonest they have is 5 weeks out and my doc is calling to see if she can get him in sooner, she thinks that he cannot/should not wait that long.  They have ruled out numerous things such as hypertension, diabetes, lupus, autoimmune, etc.  So it all points to it being his kidneys themselves that are the problem.  Like one other thing the kidneys do is filter cholesterol ... normal is under 170 and his is 294! (A year ago it was normal - 112).

4)  Manny (14 months) has the only good news!!  Remember how the ER doc said he had MRSA?  Well, we popped one of his blisters and sent the culture out.  Not MRSA.  It wasn't even staph!  Who knows what it is, but not MRSA.  Praise God.

And his sleep study is in.  I don't know what the lady was talking about last night when she told me there was a problem ... because there isn't!!  My doc got the report and said that it was pretty much normal.  He dips to 90 several times on the oxygen monitor ... but he rebounds quickly.  And the Pulmonologist had told me not to even worry unless he dips BELOW 90.  Which he didn't do.  So as far as we can tell, the baby is breathing great.  No apnea.  No snoring.  No worries.

So ... clearly we need prayers, especially for Kaley and Jacob.  But we also are asking for you to do a lot of praising for the great reports about Manny!!

Sep 7, 2010

So ill-equipped!

There are days like yesterday that I feel so ill-equipped.  Some days I zip through things and feel like, "Why isn't a film crew following me?"  I feel like I should earn Mother of the Year!  (OK, honestly those are rare, but they do happen.) 

But days like yesterday ... ugh.  And it's 24 hours later and I just now feel like I have processed it enough to talk about it. 

Background ... Zoe is 5.  She was born in China with a cleft lip and palate.  Wonderful people in China gave her surgeries and put her in an amazing foster home.  She was (relatively) well loved and cared for.  When we got pictures of her, I noticed other symptoms that were not a part of the cleft lip/palate.  I researched and found this rare condition - Hemifacial Microsomia/Goldenhar Syndrome.  I just knew this is what she had. 

I kept it in my heart only though ... I worried they might not let her out if they knew the full extent of her condition and we loved her. 

The day I met her, one of the first things I did was look in her eyes.  I knew that one of the tell-tale signs that could confirm this diagnosis was cysts in one or both eyes.  I tried not to cry as I saw them in both eyes. 

Weeks later we saw her craniofacial team here and they told me they suspected HMF/GS and I was like, "I know."  She is considered moderate to severe.  We are blessed beyond belief with the team here. 

She has had numerous operations and many, many more to come.  And up until now, we've only done things to help preserve her sight, hearing, swallowing, chewing, etc.  Nothing about the shape of her face. 

It's something we don't even talk about.  I "forget" she has this.  To me, she's just Zoe.  I don't see a condition, I see my sweetie pie. 

So now that you're caught up ... back to yesterday. 

I was sitting on the bed dressing Manny for the day.  Zoe was staring at herself in the full length mirror in the room.  (Not something I've ever seen her do.)  And she says, "Why does my nose look like this?"  I calmly said, "Because of the cleft lip and palate, remember?"  and she mumbles under her breath, "I HATE cleft lip." 
"Honey, I think you look great."  She wasn't buying it, for the first time. 

I called her over and we had a discussion on the bed.  It was only about 15 minutes but it seemed like a lifetime as I approached very difficult, sensitive topics.  I didn't want to downplay it or overemphasize it.  I was praying for the right words to help shape her proper identity. 

By the end we had discussed the plans to have more surgeries to give her a bone here and there, give her teeth, extend her jaw, etc.  Up until this conversation, she had ALWAYS said, "NO surgery!  It hurts."  But this time, she was asking how quickly we could get it all done.  She wants "the works".  As I walked her through every proposed surgery, she was like, "Yes!"  Even the Pharyngeal Flap surgery I've been avoiding so she can possibly talk clearer. 

I told her that up until now we have made all the decisions about her but that as she ages SHE will have some say in what surgeries we do/don't do.  I reassured her that I love her face no matter what we choose. 

I can only assume that this was spurred on by something said at school.  (sigh) 

I do not have a facial abnormality that progressively worsens with time.  So I cannot imagine what it is like.  I can only present the support along the way. 

I hope I gave her what she needs.  Time will tell. 

Sep 4, 2010

Zoe and Manny

Zoe so wants to be a good big sister to Manny.  But she's a bit overzealous in her love for him.  She wants to kiss him 500 times in an hour.  She likes to get in his face, I mean RIGHT in his face.  She wants to be the only one to play with him.  But she's not quite figured out how to best do that.

She wants to hold him but he is half her body weight.  And all of that weight is "dead weight" so feels even heavier.  He's very hard to hold because you have to account for all his arms and legs, not to mention this very floppy head.  He's a challenge to hold for most adults. 

But every now and then, the stars align and she is just perfect with him.  He cooperates with her.  And all is well in the world. 

Both wearing "Duckie PJs"

Sep 3, 2010

Look at me now!

Q.  Does Manny have more movement now?  Is he doing more things than when you first got him? 

A.  Yes! YES!! He can do TONS of things he couldn't do before. Sure, most babies reach some of these milestones by days old or some by weeks old ... but we are only measuring against his own abilities and are amazed!

For example, when we got him, he could not move his head even 1/4 inch in any direction. Then he got movement side to side (like saying No). Then in all the other directions. He still has the hardest with it just flopping forward. Sometimes flopping back. But he can hold his own head up for minutes at a time.

Usually his back has to be supported to do it but he can do it. And if you don't support his back at all, he can hold his head for maybe 10 seconds.

That's HUGE!

His hands ... the fingers were in complete "dystonia" ... which is when his fingers were so tight they looked almost fisted up. They were stuck that way.   Now he has a pincer grip. And he is able to hold heavier and heavier things.

First paper, then paperclip. Ink Pens are easy for him now. And I'm working towards a cell phone weight to hold.
His arms ... they were completely "stuck" in any position you put them in. If straight by his side, they were stuck there. If in the bent elbow position, they were stuck there. But now, he can lift his arm from a straight position and put them into his mouth! No help.

Shoulders are next ... he has least control there of his upper body. But before, if you put his arms in the "I surrender" position, they were stuck. (Handy when I wanted to change a diaper without wandering fingers or for him to not pull his gtube out.)  But now, he can get them down!! It's not easy but he can do it.

Now his legs. Same thing. Toes started moving. Now he can "clap" his feet.  Still no real upper thigh movement but he's coming along.

And overall feeling. Before I would almost have to press VERY hard for him to feel anything. And now, I can do almost a feather touch anywhere on his body and he can feel it!!

OK ... so that's some of the changes in the 5 months.  Next I'll have to do a blog about how well he talks. 

Sep 2, 2010


Manny came to us HATING water.  The sound of water.  The feel of water.  The hint of water would send him into a screaming fit that would last until we dried him off and removed any hint of the feel or sound of water. 
 Rain.  Bathwater.  Splashes from the pool.  Anything would start this fit. 

Makes it very difficult to bathe a baby like this.  But we did our best to go slowly and work with him.  Afterall, we live in Florida.  We're surrounded by water.  We have a pool.  It rains a lot.  I have 5 other kids who like to splash.  He needs baths due to the profuse sweating he does.
  Just recently he started tolerating water without freaking out. 

Today, he actually seemed to enjoy it!  All worth the patience it has taken over the past 5 months. 

I was struck by a thought.  I know many adoptive families feel the same way as I do about easing a kid into behaviors that we prefer.  But I also know a great deal of adoptive families who feel we need to "force" a kid to do what we want from them, to show them the expectations of them and hold them to it immediately.  (Wo ai ne Mommy show comes readily to mind in regards to this topic.) 

I tend to lean towards compassion over compliance.  Bonding over behavior.  Long-trm over legalism.  Relationship over respect.  Attachment over anger-fits.  Especially with a newly adopted child.

I have NO clue why my new son was deathly afraid of water.  I just know 2 things. 
1) it would be helpful if evantually he wasn't. 
2) FORCING the issue only breaks down, not promotes our attachment.

baby burrito

I am by no means saying I am a perfect parent.  But I am saying that *I* would like to be treated this way - with kindness, compassion, patience and mercy,  Why wouldn't our kids want and deserve anything less?

And for ME ... the proof is in the results. 

Sep 1, 2010

Oldest and Youngest

Jacob, our oldest, is 12.  After a lot of debate and discussion, we have decided to homeschool him this year again and not send him to public school for middle school.  (We homeschooled him K-4th grades, public school for 5th.)  He is THRILLED with the idea.  Quick version ... he has Asperger's Syndrome (on the autistic spectrum) along with some other neurological and medical challenges.  He was overwhelmed by the over 1000 students.  Even 2 weeks in, they still had not been able to set up accommodations for him, etc. etc.  So we decided to homeschool.  We will have heavy emphasis on life skills and social skills. 

By having him home, I've already noticed some benefits to me as well.  (Always nice.)  For example, Manny was doing silent retching the other day in his car seat and I would have never known.  Jacob was sitting beside him and told me so I could handle it.  Jacob also can carry heavy objects.  He can watch/entertain the baby while I'm say on the phone or something.  And the baby is coming to really love his big brother.  Jacob never spent much time with him before - I don't think he wanted to compete with the other 4 kids.  But now, they're forming a very special relationship.  So sweet. 

Medically new thing  ...   For his 12 year old check up in July he did a urinalysis and it came back abnormal.  They did several spot checks over the next few weeks and every one came back abnormal (protein very high). 

Today the doctor ordered quite a few tests for Jacob.  She felt this needed to be explored further.  May not be a huge deal but it could be. Our doc is very conservative so if she is going through all these tests, she must be a little concerned.  I looked up possible conditions and none of them are very good.  To have protein periodically might not be a big deal but to have it every time of day and every time it's tested over a period of a month, it points to something.  So thanks for prayers for him. 

Now for the youngest ... Manny.  He usually has visits with this doc every 1-2 weeks and it's been over a month.  So I had a lot to discuss. 

"Kaley put a newborn hat on me and made Cat Ears."

1)  Changing him from Palliative to Therapeutic care.  She agrees!  It's done.  She changed his diagnosis to be only "Hypotonia".  Everything else is just speculation so until we know otherwise, that's all he has.  As a result, he will be able to receive more services such as more Physical Therapy, serial casting (for his contractures), etc. 

So what?  Besides the additional services he can receive now ... it also means that he no longer is listed as having a terminal diagnosis.  That's HUGE!  They originally gave it in May when they saw the MRI and suspected he had x, y or z.  Those have all come back negative but the diagnosis of terminal stuck.  So I basically asked that it not be put back on him until we knew what it was.  She agreed.  We even talked about revoking his DNR status.  And I told her that it was written in his pre-adoptive name.  And that it's not valid unless we re-do it in his new name.  Which I haven't done and she is not recommending at this time.  So we dont' even have that any more.  (A future diagnosis could change all this but for now, I'll take it.)

2)  He needed to have a specific type of blood test (For SMA - Spinal Muscular Atrophy as the one done at a week old might have been a false negative.)  But ... his insurance doesn't pay for it.  And since it's a genetic test, it's very expensive (read: Not in our budget).  His doc recommended that we contact a few places and see what they can do about it.  She is going to contact the most likely one for us today. 

3)  His "MRSA" bumps are back.  He has 3 currently.  One on his forehead, one on the front of his thigh and one on the back of his other thigh.  She was able to gently burst one of the blisters and get enough fluid to send in a culture to see if this really is MRSA or something else. 

4)  His gtube cellulitis is all cleared up.  I noticed how it is always in the same place and same shape ... just about the shape of his mic-key button.  So I have been putting a little 2x2 gauze between his skin and the button and instantly it cleared up.  She said she thought it was likely an allergy to it too.  And even though the 2x2s will keep it "dampish", it's better than letting it get infected again. 

5)  His retching.  Remember those?  We have discovered what triggers them.  Once we adjusted his feed rate and times of feeding, those went away completely.  BUT ... then he started getting them again and I noticed it was every time he was on an antibiotic!  He would retch like crazy until the course was done.  And during those episodes, the only thing I can do is drain his g-tube.  I would get like 50 cc (near 2 ounces) of mucus out!  Then he would be just fine.  If he doesn't get his dosage, he won't retch.  So clearly, it upsets his tummy.  But at least I finally know what to watch for! 

6)  Growth ... his GI doc put him on a certain amount of pediasure as his feeds. I thought he was gaining weight too fast so I cut it back just a bit.  Today, he is now 21.9 pounds!  Almost 30 inches.  So he is growing very quickly.  Still on the shortish side but is getting a bit chunkier.  (Love those chunky legs).  But too big and it will make it harder for him to breathe and diminish any hope of him becoming mobile.  He is not as active as a regular 14 month old so he doesn't need the same amount of calories.  Doc said to keep it at this for now and then we'll review his weight again next month. 

There's more ... but that's enough medical terminology for now.  (Yes, when I speak to medical personnel they always ask if I'm in the medical field since I know all sorts of stuff off the top of my head.  Guess that's what will happen when you have 6 kids with special needs!  Degree courtesy of Google. LOL)