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. 

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"

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. 

Rub-a-dub-dub

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. 

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)

Sleep Study

For days now, Manny has been waking up at least once an hour.  Sometimes it's every 15 minutes.  He cries or screams.  I think it's some kind of pain but where?  And how to fix it?  Who knows.  So instead, I wake up and "rotate" him.  I reposition him and it seems to take the edge off enough to let him fall back asleep. 

Thankfully he sleeps in a crib that is right next to mine so I can do this without leaving my bed.  (Good planning on my part.) 

Well after several days/weeks of this ... the sleep depravation adds up. 

So the irony of it being a sleep study last night cracked me up.  I kept wondering how *I* could sign up for such a gig ... actually EXPECTED to sleep. 

Why a sleep study?  Back in May with his diagnosis, a sleep study was ordered to determine if he was trading oxygen for carbon dioxide ... basically shows how effective his lungs are.  During that hospital stay it was determined he would need to go home on oxygen due to desaturation.  Somehow the sleep study never was brought up again and I thought it was due to him going home on O2. 

The other day his pulse dropped so low for so long and we told the pulmonologist about it and he ordered it done.  So we went last night. 

Wires.  Everywhere.  Tubes.  Everywhere.  Baby.  Not thrilled. 

He was asleep by about 10 pm and by 5am they woke him up and we were gone.  She came in several times during the night. 

Everything was fine with the whole evening except this one thing ... she said she was not allowed to give him oxygen unless he desaturated a certain amount for a duration of time.  (Any of this sounding familiar to anyone?)  I kept having flashbacks of the hospital when the nurses and I (in my sleepy state) would be arguing about how his doctors ordered oxygen for him. 

Anyway ... there is no pulse ox in the room ... she has the machine with her in the other room.  She said that if he dropped even once she would follow the doctor's orders and put him on the oxygen.  She never came to do that so I was actually thrilled.  I kept thinking ... "Maybe he's better!  Maybe he doesn't need oxygen at night any more!" 

But my hopes were dashed and my anger grew as she told me this morning that he did indeed dip several times but that SHE made the judgment call not to give it to him.  aaaaaaauuuuggh!!! 

So ... I have decided what to do about it.  (After calming down.)  I will call the Pulmonologist (who ordered the sleep study AND the oxygen) on Thursday and ask for the test results.  I will then also ask for clarification of when he needs and doesn't need oxygen.  I need clear guidelines.  I will then ask them to give it to me in writing.  With their signature and their phone number on it.  I never want to find myself again arguing for oxygen for the baby!!  I've done it too many times already. 

In other news: Last night was his last dose of his 2 oral antibiotics.  And around noon today I noticed he has a new spot on him (the ones they diagnosed as MRSA).  By 2pm he had a 102.8 fever.  By 5pm I noticed a second spot on him but fever is down to 101.4  and he is a grump.  There is a rash starting on his face too.  (sigh)

But ... tomorrow I will be seeing his pediatrician at 9am and she is going to help me sort this all out.  AND we are going to discuss the possibility of him being transfered from palliative to therapeutic care.  (More discussions about that on the blog to come.)  But basically we don't want him to be denied services due to his prognosis. 

Finally, I called the Neurologist office today to see if I could get some answers from them on this subject.  And quite honestly, the nurse combed through his file and the ONLY diagnoses she could find were "hypotonia" and "possible seizures".  NOTHING, not ONE thing about a terminal diagnosis.  So now I'm wondering who gave him that prognosis?  I was told them.  But they say no. 

Very interesting!

A Special Bond

Kaley was the first of the kids that met Manny.  She went with me to the hospital in Orlando to help pick him up.  I wanted someone in the back seat with him to make sure he was doing well.  From this first moment he saw her, he was entralled with her.  (And she was likewise with him.)  This is the moment they met.  I still have that outfit Manny is wearing along with one of the blankets he is sitting on.  This picture is from March 26 ... it was the day he was 9 months old. 

They have this special bond.

I think she as this innate ability to know how to help him, how to play with him.  I think she might just become an occupational therapist due to all this.  She just has this FEELING about what toys to place in his hands to make his fingers open a certain way ... or what things to prop under his legs so they don't do the frog position ... or how to prop his head just right so he can reach further. 

She started school this week and he kept wondering where she was during the day.  He would look over at her car seat.  I wish I could explain it to him. 

But when she gets back in the car after school, he squeals with delight.  He is ready to play with his big sissy.  And she is more than ready to play with him.