She's HOME!

As I type this, Angela is sleeping peacefully on the couch next to me. She wasn't super thrilled about coming home. You know, at the hospital she has complete reign of the TV, and the nurses love coming in to visit with because she's so adorable. Yeah, I am immune to the cute. Totally over it. ;-)

 Admittedly, they don't often have patients on the PICU who are quite so active and chatty, so I guess Angela was a welcome change. Errr maybe not! She was awake all last night, finally falling asleep around 6:00 a.m. She slept for two hours and was wide awake until 8:30 tonight when she finally crashed. When I arrived at 11:00 am the PICU doctor said it was a "rough night" because Angela was quite wound up. Hmm maybe because she had essentially slept for the last month, and then there was that deep coma-sleep for her first 24 hours in the hospital. She was feeling the best she had in ages! Why would she want to sleep? LOL

The ultimate conclusion is Angela's gtube has changed the way she's absorbing meds, probably because we're dissolving them before putting them through the tube. Slow release meds are being absorbed immediately. Since they got to see first-hand what Angela is like when she's NOT sleeping, the doctors didn't like the idea of her being completely off one of her meds so wanted to start it back up, but at a half dose. I reminded them she's been off all but her seizure meds since Saturday, but they still wanted her back on the one medication. 

I'm just thrilled that our chipper Angela is back. Of course, she is anxious to be back at her transition program but they're on a break through next week. It might be a looooong week keeping her busy! 

ICU Update 3

Well, this will be my last update from the Intensive Care Unit! Angela was actually moved to the medical/surgical floor around dinner time, but they don't have a bed available so she is still in ICU, but her level of care has been significantly reduced!

Angela is fully awake! She has been awake and talking, talking, talking  all day long. She has been more awake today than she has been since October 6th.

This morning we were told her EEG showed slightly decreased activity on the right side so they ordered an MRI+MRA. Those tests showed no change from her last scans done in 2007. The doctors had a pow-wow in her room, and the conclusion is she just cannot be on all her meds anymore. Her medication blood levels were within normal ranges but for whatever reason that seems to high for her. This is most likely due to her "sustained release" medications no longer being slow to release when they are crushed and put directly into her stomach via gtube. As I mentioned in a previous post, the neurologist said he has seen this a couple of times over the years, but the ICU staff had never seen it. Nobody has any ideas other than the medications. When asked about the left-sided weakness this morning I was reminded that she has had hemiparesis since she was an infant. Normally the only time its noticeable is when she's swimming. She isn't able to kick her left leg very well, and her left arm doesn't have full range of motion. But this event left her very weak, making that left-sided weakness more apparent.

I am home to help Dean tonight. Now that Angela is awake and mostly herself (she's not walking without help yet) she and I were both comfortable with me going home. She will likely be discharged tomorrow.

Thank you so much everyone for your prayers and support. They mean a lot to us as we navigate this very scary event.

Now, I shall go change out of the pajamas I've been wearing since Saturday evening! 

Update 2

Dr just came in and said neuro says her EEG shows slower activity on the right side of brain. This is the side at risk of stroke so she'll have an MRI done to check for a small stroke that couldnt be seen on CT when she was admitted. It could also be she had seizure on that side. We'll see what the tests show. 

ICU morning update

Last night Angela had several moments of being able to answer simple questions. Things like "Do you want a blanket?" Or saying hi back to someone. All with her eyes closed.

About midnight I went to a parent sleeping room. I prayed for a miracle overnight. That I would come back to find my girl awake. The nurse told me that at about 6:00 this morning she very clearly said, (eyes still closed) "Its Monday. I need to brush my teeth. The bus is coming." The nursing staff frequently tells her that she is in the hospital, that mom is here, what day it is, etc to help her reorient every time she wakes up. The nurse went to get her a tooth brush and when she came back Angela was out again.

Meanwhile at home Dean is managing with the other kids. He truly is the most amazing dad. The kids woke him up early this morning (gotta love daylight savings time!) So he had everyone up, dressed and breakfast done by 6:45. All that was left was to brush teeth and comb hair, then wait for those beloved buses to come!

Praying we continue to see her wake up. And that she is able to start opening her eyes. She's in there somewhere, trying hard to get to the surface.

2014 was.the year of cancer and Audrey. What label should we give to 2015?

Intensive care

*note this post was written on my phone over the course of 8 hours. Lots of typose and time lapses I'm sure.
....................

I'm sitting in the intensive care unit with Angela who is unresponsive. I'm a bit stunned we have come to this point.

I recently said to someone that Angela has not been right since the day of her surgery on October 6th. She was her usual bubbly self as she walked herself into the OR. But something happened that day, and it now seems as if its more serious than any of us were aware.

She has been so off. So lethargic. Struggling to stay awake more than a couple of hours. Falling asleep everywhere and generally jusy struggling to stay awake. Ambulances have been called to school when they couldn't get a blood pressure on her, and just yesterday the blod pressure monitor I ordered arrived. I was able to get accurate readings on everyone in the house, but no reading at all on Angela.  Just a week ago I told someone I feel like she's slipping away from us. Like we're somehow losing her. Like she was swimming underwater and couldn't get to the surface.

We went trick or treating. Angela participated but still in her fog with a few moments here or there when we saw flashes of the girl we know so well. We even let her have a few bites of Ashers birthday cake (mostly frosting that would disolve) but she was too sleepy to enjoy even that.

She had her evening food and about 10:00 I moved her to her bed. But she was sooooo out of it. I told Dean if she was still like this in the morning I was taking her into the ER. Remember, she went trick or treating with us just a few hours before.

At 3:00 am I rolled over in bed and heard very clearly in my ear, "go check on her." I sleep very soundly from my own cancer related drugs. I rolled over and thought I will. In just a few.minutes I will. But again, louder, "No, check on her NOW."

I  went downstairs to her room.her mattress has been on the floor because we packed up all the beds thinking our house was sold. She was on the other side of the room, face in the carpet, arms and legs all contorted the wrong way. I couldn't wake her up! I ran to get Dean to call 911. She was completely unresponsive, breathing but with a horrible croupy sounding cough (later I would be told the cough was because her airway was too relaxed.)

The paramedics came and still no response. It took a bit but they finally loaded her into the ambulance. She became VERY combative but could not follow directions. I followed behind in my van. About 1 mile from home they turned on lights and sirens and took off. Another mile and they pulled over. I was trying not to freak out but my sister was on the phone with me. Finally one of the crew came back to tell me they were trying to get an airway on her and to stay in my car. Then another ambulance came, and that crew ran from thier rig to the ine Angela was in. It seemed like there were 20 people in there! Finally they came back again, saying they weren't going to do an airway. That they were going with lights and sirens with both crews and to just meet them at the hospital.

She was so very combative at the hospital. Thrashing and rolling but unresponsive to anything but deep pain stimuli. Nobody could figure out what was wrong. All i could think of was omg this is the big stroke we were warned about years ago, when she got her make a wish. She had a CT that thankfully ruled that out.

She was moved to ICU. A million labs were drawn including her medication levels, looking for infections, organ functuon. Really anything they could think of. Finally in the afternoon the neurologist came in he said they were all grasping at straws be he felt this was all neurologocal and not organ related. One thing he has seen, only a very few times, is kids who were switched to gtube, and went from oral meds to gtubed meds. Oral meds you dont get 100% of the dose in your blood stream, plus what goes to the stoach is disolved and subsequently absorbed at different rates. But when you switch to gtube you disolve the meds first so 100% of the dose goes to the blood stream. Angela has always been hypersensitive to meds, so it could be for the last month we have inadvertently been over dosing her on the meds! That would make sense that my saying she has been off since she woke up from surgery because she got her meds right on schedule that night, but disolved in the gtube!

She has been hooked up to the EEG all day to rule out seizure activity. It has shown that she has been in the equivalent of a drug induced coma and is just sleeping. The deepest sleep ever. Unresponsive. At about 6:30 tonight she 1/2 opened her eyes. Over the course of an hour she was able to wiggle her toes on command, but not open her eyes. She could not squeeze my hand but shook her head no when asked if she wanted a blanket. I put the ohone to her ear so she could hear Dean talking to her and she managed to mumble "I got a IV Dad." And was back to sleeping.

The doctors here are stumped. The neurologist said he has seen this once or twice before in his years of practice. It is highly unusual, but if you know Angela, that is her norm, to not follow the rules. The nurses keep saying "this is so odd. This is how you give meds to a gtubed person!"

So that is where we are now. She is in/out of consciousness, with "conscious" being a very altered state. We hope to see her continuing to wake up iver the next 24 hours, then can evaluate what if any damage has been done

Happy Birthday Asher!

It is Halloween, but it is more than that to us.

Eleven years ago, on the other side of the world in Kragujevac, Serbia, a baby boy was born. His name was Lazar.

When Angela was born I was immediately surrounded by a community of parents who already knew how raising their children with Down syndrome was a positive thing in their lives. I lived in a community where every possible support service was already in place. I didn't have to fight for Angela for anything, it was all handed to her.

Baby Lazar's parents were not so lucky. Eleven years ago Serbia had next to nothing in the way of services, and society frowned upon those who chose to bring their "defective" children into their homes and neighborhoods. I can only imagine the anguish little Lazar's parents felt as they made the best decision they could: to place him into institutional care.

Four years ago today we didn't know it was his birthday as we hit "send" on an email to the Serbian adoption authorities. We said yes to a tiny 7 year old boy who's face we had never seen. We said yes based on the very diagnosis that caused him to be rejected by the society of his birth. Just a few weeks later we brought him home. We named him Asher.

Genesis 30:13

Then Leah said, “How happy I am! The women will call me happy.” So she named him Asher.

Today we sang Happy Birthday to our boy. Our Asher.  I hope the mother who carried him in her belly for nine months understands how much we love this boy. I hope the father who was so excited to meet his first son knows how much thankful we are for this gift we kiss each morning. The fact our blessing means sadness to another family is not lost to us, and there is not one day that goes by when I don't think of them.

Happy Birthday Asher Lazar! We're so happy you're part of our family!
(please excuse my terrible singing!)

A whirlwind!

Angela has not been doing so well since her surgery. A variety of problems, most of them related to chronic hypotension (low blood pressure) that we can't seem to find a cause for. We've had an ambulance at school for her twice, and lots of "Hmm, do we bring her in or not?" I did bring her in a couple weeks ago because she was just generally off and very lethargic. Thankfully they were quickly able to find the problem. Though it wasn't fun to remedy, it only took a couple of hours and we returned home by midnight that night. We're hoping to get all this stuff sorted out so we can get our bubbly girl back. She is still really enjoying her current program and really misses it the days she can't go. 

On the 22nd I took a much needed vacation with a group of moms who are also adoptive parents, some to kids who are very difficult to parent like a couple of our kids. We talked about parenting a bit, vented some about our kids as all parents will done on occasion, but mostly just enjoyed the break! There was sleeping in, naps and some time in the sun to replenish the Vitamin D stores! 

Abel had surgery on his knees/ankles in September. He had a recheck right before my trip and is doing well. We'll repeat xrays in a couple of months to see if the hardware is ready to come out, and whether or not he's ready for the soft-tissue repair. We know for sure, without this surgery he was destined for vary serious knee, hip and ankle problems in the very near future. 

Audrey has an upcoming recheck of her hardware. She is growing very slowly so it is taking a bit longer. At her check up we'll determine if the hardware is ready to come out and whether or not she's ready for the soft tissue repair. She is able to completely dislocate her knees, ankles, hips, shoulders, elbows and wrists. We don't think we'll be doing anything to fix her upper extremities but the lower extremities have to be addressed or she will lose mobility. Other than the joint problems, Audrey is extremely healthy, which we are thankful for. Behaviorally she has certainly come out of her shell in the last few months! She is a very busy (and noisy) young lady with a lot to say. We can't wait until we cab understand all that she wants to tell us. 

Asher, he just keeps plugging along. He rarely gets even a sniffle. He is loving school this year and really taking off with his academics. His understanding of English has finally clicked too. His sign vocabulary has grown exponentially which is fun to see! He will turn 11 on 10/31 and he is very excited for his birthday!

Axel is just finishing up his first soccer season on the adaptive high school league. He doesn't really understand the game yet. but he is trying hard to participate. He plays on the JV where all the players are really just learning to understand the game. His reading is taking off, as is his understanding of math. His favorite thing to do is find a magazine, cereal box, or really anything with print and copy the words and sentences into a notebook. We have LOTS of papers around here that he has autographed.

Amos continues to progress in our family. He has learned so much in the 6 months he's been here. He came to us refusing to walk much and unable to really do anything for himself. Now he feeds himself, dresses himself, uses the bathroom, gets his shoes/jacket/backpack on, gets himself into the van and his car seat straps on. All things he should be able to do, but didn't when he came. Every day we increase our expectations to the next step so that he can become more independent. 

As for me, I have just one surgery left. On Nov. 6th I will have my tissue expanders removed and my implants placed. That is the very last step in my reconstruction process and I am eager to have it behind me! 

Our lives are centered around food

Physically Angela is doing as well as can be expected. Her system is adjusting to her new way of eating as well as her new diet. (gluten free, dairy free, casiene free) Never before has it been more apparent to me how much our lives our centered around food. Every major holiday is scheduled around the meal, family reunions we discuss what dish we're bringing to pass, mother/daughter dates a dinner out, or starbucks, or some other food related item always seems to be included. Class parties at school are about pizza or cake.

And then there is Angela.

One week ago tonight was the last time she had anything by mouth. I know the cravings are driving her crazy! Of course she has done better than I thought she would, but we're still putting locks on the kitchen pantry (It started out as a necessity for Audrey but now we have Angela in the mix too) In the beginning when we were discussing the tube we thought maybe she could have a pudding or jello at lunch with her friends or when eating with family. Unfortunately after surgery we were told no because her airway is so inflamed due to severe irritation due to chronic aspiration. Finally, for the first time in months, Angela does not have a horrible cough and we don't want to push her back over that edge.

Today we went to visit her transition program. She has missed a lot of school and really misses her friends. It was great to witness their warm welcome when she entered the room. Then I met with her program case manager and the school nurses to discuss Angela's new plan of care. After a bit Angela joined us and she was already pale and tired looking. Clearly she is not yet ready for full days. She will attend half day Tuesday and Weds, then there is a statewide school break until Monday. I think by then she'll be ready to return to full days.

I cannot tell you how hard it is to tell my child she cannot have french fries or pizza, ice cream or waffles, pop or juice. She has even requested milk and eggs, both things that she dislikes I am praying her cravings go away sooner than later as she forgets what food tastes like.

This past week has been exhausting. Combining all the things affecting my health has wiped me out, and Dean is feeling it too. We started out the school year with Angela in the hospital and have yet to find our morning routine. We hope that next week we can find the calm, peaceful mornings we cherish with our kids. 

This is tough

Angela and I arrived home tonight, just a few minutes after 6:00. Dean and the kids had just sat down to dinner, the aroma of hamburgers and french fries heavy in the air. I was thankful Angela had just had a feeding 30 minutes prior.

Angela went around the table, hugging every one of her little sibs (and Tyler too!), showing each of them her new appendage. I excused myself from the room for a moment, and when I returned she had taken her place at the table. "Mmm French fries. My favorite!"

I gave her a gentle hug. "Remember sweetie? You're not able to eat french fries anymore. Eating with your mouth is making you very sick, so you're eating through your tube instead."

"I can't have a hamburger?"

"No honey. I'm sorry you cannot. Come downstairs with me and we'll find your pajamas."

"No." she said in the saddest voice I have ever heard, then hung her chin on her chest and sobbed great choking sobs as the other kids continued to eat around her.

Oh my sweet child. How do I take away what we all love the most? Something we all find such joy in every single day of our lives?

Tonight she is sleeping in our bed with me. Every time I check in on her, I'm stunned by her color, or lack of. She is white as a sheet with giant dark circles around her eyes. Every time I check in on her, for my own piece of mind, I wait to see her taking breaths.

God, I don't know what you have in store for us. I don't like that my child is being tormented by food she cannot have. But I thank you. I thank you for a formula that should bring her to the healthiest state of her entire life. I thank you for doctors who worked. and are working, to find solutions for our girl. 

Going Home!

Surprises

Surgery was nice and quick. The GI doctor came out and said her stomach and duodenum are severely inflamed and red, which is indicative of celiac disease. This isnt super surprising since she has the genetic markers for celiac, and yet she has no sumptoms. The good thing is the formula she'll be eating via tube is gluten free.

Angela is doing well, refusing to let herself sleep but she is at least resting quietly.

Last supper, plus dessert!

I thought it odd that I didn't get the usual "night before admission" phone call from the children's hospital where Angela would be having her surgery. I was on the phone at 6:00 am to verify what time we were supposed to check in. I'm so glad I did that!

As it turned out, there had been no phone call because Angela wasn't on the surgery schedule. At all Monday or in the near future. To say I was a bit irritated would be a huge understatement.

It was explained to me that after our consultation the surgeon called the adult GI we saw a couple weeks ago to verify which type of surgical approach was written in the orders. The surgeon - who has done all of Angela's surgeries in the past - explained to the adult GI that given Angela's history and the amount of scar tissue she has in her abdomen and stomach, he didn't feel comfortable doing an open procedure. Instead he requested the pediatric GI specialist be in the OR as well and together they do an endoscopic procedure. The scheduling people for the two doctors would need to get that set up, but I was to receive a phone call letting me know that surgery had to be moved to another date. I didn't get that phone call.

I didn't blow a gasket on the phone. I remained calm as Angela sat on the nebulizer in the background treating her current case of aspiration pneumonia. Yes, I remained calm. Ultra calm, ultra cool, and 100% clear that I expected this to be scheduled immediately.

Angela was so excited to be going to the hospital today. It is as exciting to her as a Taylor Swift concert, or a trip to Disney. She wasn't able to eat because of her not-scheduled surgery, and we were hopeful we could get her a last-minute slot. That wasn't to be, so when I finally made her some lunch she was a bit annoyed with me. "I can't eat. I can't eat that. I'm having surgery and I can't eat." Thankfully her hunger won out and eat she did.

This afternoon she wanted me to show her pictures of kids with gtubes and PEGs again (a PEG is a type of tube, usually temporary until the stoma is healed and a button can be put in a few weeks later)

Angela's surgery has been rescheduled for this morning, October 6th. Check in is at 8:00. She went to bed reminding me of the schedule, "You will wake me up, right mom? You will tell me its time to get dressed, but I can't eat. Nope. No breakfast for me. Then we will go to the hospital and I will get my I.V."  I swear, Angela is the only kid I know who likes IVs.

I'll try to post an update in the afternoon after surgery.

The last supper

Its 2:11 a.m. on Sunday morning. Monday morning she'll be admitted to the hospital to have her gtube placed. That means today is her last day to eat.

Can you even imagine????

I have a lot of hopes and prayers right now:

I pray that this is more difficult for us than it is for Angela.

I pray that she has been so uncomfortable eating that she is is *relieved* she doesn't have to anymore.

I pray that she doesn't have the wound problems she did when she was little and had a gtube. (we had one problem after another for four straight years!)

I pray that Angela understands how much we love her and want her healthy.

I pray we don't have any problems getting her insurance to cover the formula we want her on. The usual stuff is just junk!

I pray she doesn't get sick from all the favorite foods I'm going to let her eat today.

I pray that our spunky girl doesn't lose her spunk in this process.

And I thought telling my child I have cancer was hard

During Angela's last stay at the children's hospital, the pulmonologist said to me, "Whatever you do, don't bring her to one of the adult hospitals. She won't get the right level of care. We will continue to treat her here."

Ok. Well to go to the pediatric hospitals we have to have pediatric doctors. I tried to schedule an appointment with her old ped. GI specialist but was told I couldn't because she is 19. She would have to see one of the adult GI specialists there. I hate seeing new doctors with Angela. I hate having to explain 19+ years of medical history, what surgeries were done when and by whom. I just want simple. It is simple when we can go to someone familiar and I already trust. Its hard for me to not put a wall up before we even walk into the office. Thankfully I really liked this new doctor who agreed he should not be Angela's doctor. He was very nice, and very knowlegable. "You know, this is a very rare disease that she is too young to have." 

Yes. Yes I know this.

We discussed going out to Boston and the options that are available to us to treat this monster called CA. Unfortunately, because Angela's swallow study is horrible, he doesn't think she is a candidate for any of them. They wouldn't solve her problem. Unfortunately, this is the progression of CA. At some point the epiglottis stops functioning properly and instead misfires. It spasms with every swallow (You can't see it on xray video swallow. It is only evident using manometry, and we saw it 6 years ago when she had it done in Boston.) We could dilate her cricoid again, but it wouldn't solve the problem of the spasming epiglottis. We could inject the muscle with botox to loosen it, but we risk damaging the epiglottis further. There is no "win" for Angela. There is only lose and more lose. 

The Dr. confirmed what we already knew. Angela can no longer eat or drink anything safely. Never. Ever. Again. I have dealt with a gtube before. Angela had one until she was 4. She doesn't remember it, but I do. The tube itself is not that big of a deal. Its the psychological part of this process that is tough. 

In March of 2014 I sat in the car with Angela and told her I have cancer. At the time I thought it was the most difficult conversation I could have with my child. I was wrong. I didn't know what was ahead of us. This time I had to tell her she could never eat again. None of her favorite foods. Done. It makes my stomach turn in knots just thinking about it. 

But let me tell you what is scary. Nobody knows what comes next!! Nobody knows enough about this process to know the next step! Medical theory says this disease process moves downward through the GI tract, but does that mean her stomach will shut down? Her small intestine? One of her organs? Nobody knows the answer to this because people who have this disease die before it reaches this point. We don't know what comes next and it scares me.

The xray camera doesn't lie

....so she gets to the hosital via ambulance with a bottomed-out blood pressure. Long story short she had aspiration pneumonia again!! Ok, two bouts in three months is not a good sign. It was decided we would do another upper GI and a video swallow. At least those could get done here and not have to wait until we go to Boston. These are very routine tests. 

Angela is anything but routine. 

We did the upper GI first. Angela's nissen fundoplycation is still intact. She had the open procedure done at 11 months old. Amazing, considering they usually last 7-10 years. She did have distention at the base of her esphagus, and what appeared to be her hiatial hernia having enlarged a bit from previous years, but otherwise not a bad study. 

Next was the video swallow. This did not go so well. Oh, Angela did fine for the test, but the results were very bad. First, for comparison, you need to see what a normal swallow looks like. Sorry these are a bit tedious, but its easier that trying to explain.

This is a normal swallow in an adult.

video courtesy Neinia Ferguson

Now, here is Angela's swallow of thin liquids. It is easy to see where her airway is because the barium goes into it. You can also see the barium sitting in kind of a small bowl-type area just below her airway. This is the cricoid muscle that is so tight, it doesn't let all the liquid through. 

Next they would normally go to nectar consistency liquids, but we skipped that and went straight to honey thick. Not only will you see her aspirate, but you will also see that she has some residual stuck at the back of her throat. You and I would be coughing due to the sensation. Angela gives no reaction. 

Here come the solids. You'll see her aspirate. You'll see her tuck her chin to protect her airway. You'll see the solids stick in her cricoid. You'll see A LOT of residual food sitting in her pharyngeal area. You and I would be gagging. Angela gives no reaction.

Last, we send down some honey thickened liquid to help push the solids through the cricoid. The doctor asks her to cough because there is too much residual sitting that Angela isn't reacting to and its not safe. But Angela has lived her whole life like this so it feels normal to her:

Angela was discharged labor day weekend, with an appointment scheduled to see the GI specialist just a few days out. It is clear that the Achalasia has progressed. Her swallow study is significantly worse than it was a few years ago. Not only that, but she cannot swallow *any* consistency safely, including her own saliva. The decision is made that she needs to go back to a gtube.

Two words I hate: Cricopharyngeal Achalasia

I need you to go back on my blog several years. Six years, to be exact. You'll want to read this post, particularly the last two paragraphs. Then come back here.

Key word: Cricopharyngeal Achalasia = CA

I'm not sure what I thought six years ago when we sat in the office of Dr. Nurko at Boston Children's hospital. I remember him telling me, "Well, she's doing really well right now..." and we discussed plan of care.

About a year ago I noticed that Angela was having more episodes of food getting stuck in her esophagus, and just some subtle changes to how she was swallowing. Things like tucking her chin, which I knew she was doing to protect her airway. I started getting my mind prepared for the fact we would need to head back to Boston soon.

Then in April Angela had a very bad case of aspiration pneumonia. Actually her lungs didn't look too horrible on x-ray but she was having a tough time managing her airway. She had to be on oxygen for several days and her blood pressure kept tanking. Getting to Boston was discussed, but the doctors at St. Paul Childrens Hospital had never seen a patient with CA before. Gee, surprised surprise! NOT! Nobody has seen it. There are currently only three kids in the entire USA right now who are living with CA.  Angela is the oldest. Two are treated by Dr. Nurko in Boston. There was another person with DS who had the disease, but at the time we saw Nurko 6 years ago she had already passed away from complications of the disease. If I remember correctly she was 14 or 15 years old.

Let me tell you a tiny bit about CA.

There are three types:
1): acquired CA: Usually happens to elderly stroke victims and is not progressive. Most people with acquired CA die from complications from either the stroke that caused it or aspiration pneumonia. Acquired CA is not progressive.

B: congenital CA: It is not uncommon for newborns to have CA. It is not progressive, but the newborns need to have a myotomy (cut) in the cricoid muscle so they can swallow safely.

C: CA of unknown etiology. There is no known cause, and it is a progressive disease process. It is EXTREMELY RARE. It is NOT related to Esophageal Achalasia which is significantly more common. Again, it is a progressive disease.  This is where the last two paragraphs of that other post become important.

Now back to Angela's pneumonia back in April. She had one really bad bout and got over it. Summer marched on and we put it behind us. In the meantime I started working on getting Angela back out to Boston. One round of aspiration pneumonia in a person with Down syndrome isn't completely shocking. It happens and you move on.

On the August 30th Angela started coughing, which is not unusual for her. By morning her cough had changed a tiny bit. Around noon there was a shift. Her cough was sounding wet. I called the pediatrician's office who said they could get her in at 3:00. At 1:00 I put her in the car and headed for the peds office anyway. Its only a few minutes away. On the way there she said her chest hurt, and thats my indicator that we're headed for trouble. Her chest hurts because of how she's breathing. As always they put us right into a room and took her blood pressure right away. She was low, but not so bad that that she was going to crash on us. We did a chest xray and the tech showed it to me. Oh man...yuck...her lower right lobe was a mess. The doctor got all Angela's paperwork ready for me when I said, "Nope. I want her transported this time. Last time she tanked on me in the parking lot." Looking at how Angela was in that moment the doctor thought transport was a bit overkill but followed my lead anyway. Two young male paramedics walked in and Angela declared, "Oh, you're smok'in hot! I'm riding with you guys!" The paremedics seemed a bit confused that this very with it young lady was going to ambulance. I was following the ambulance when we came to a yellow light about four miles from the hospital. The ambulance made it through, but I did not. As the cross traffic started to move in front of me, the ambulance turned on its lights and sirens. CRAP! CRAP CRAP!!
I got to the hospital just a couple minutes after them. Angela's blood pressure had bottomed out in the ambulance.

Ok...that's about enough for this post, huh? I'll continue with another post so you can rest your weary eyes.

Are you aware?

October is a big month in our house. It is Down Syndrome Awareness month as well as Breast Cancer Awareness month.

Tell me, are you AWARE of Down syndrome? If you're reading here, I'm sure that you are. Enough of awareness, what we need is acceptance. Your acceptance tip for today is this: Accept that when you say, "I just hope it's healthy" that having Down syndrome doesn't make a baby unhealthy. It makes them just one chromosome different than you.

Now lets talk about breast cancer awareness. Do you know it exists? I'm pretty sure you have to be living under a rock if you don't. I see all the "secret" memes go around social media, "I like to hang mine on the back of a chair." which is supposed to somehow raise your knowledge about breast cancer. How does wearing a pink ribbon on my lapel increase your knowledge? It doesn't. So I am going to go out on a huge limb here and talk to you about the realities of breast cancer. Here is my real life breast cancer experience from today:

I was by myself (gasp!) in a new, local sandwich shop; a bit on the upscale side because I was giving myself a little treat. There were a lot of local moms there, all dressed in their labels and high price tags. I wanted to stick out my tongue and say, "You know in ten years you're going to be sorry you wore those shoes." and then kind of wanted to hide in my Gloria Vanderbilt stretch denim jeans and a top that suddenly felt like a gunny sack. It was in that moment that I decided I might like to give Stitch Fix a try.

I sat down at my computer and scrolled over the informational parts of the website. I entered my name, email address, etc. Then it was time for the style profile.

Date of Birth
Height
Weight
Bra Size

BRA SIZE????

This is where you should hear the sound of a record player needle scratching to a stop on your favorite vinyl album.

There is no place to select, "I have no boobs".

There is also no place to enter, "I have tissue expanders that feel like cement blocks. I'm pretty sure they are size 34FF."

If by chance I could wear a bra, if I wanted to wear a bra, I can't even guess at it's size. I have rolls and creases, bulges and scars in places they shouldn't be, making wearing a bra impossible until after my next surgery.

So there you go. The next time you get to fill in the little box that says, "Bra size" you can count your blessings. Someday, when its a bit more removed, I may post a picture of what my chest looked like at various stages of the reconstruction process. Now THAT would be awareness!

Hi!

Do you still check here? Do you wonder if I will ever write again? Believe me, sometimes I wonder the same. Life has been beyond busy for us the past 3-4 months. Trying to sell the house, surgeries and hospital stays for kids, and trying to sell the house. The summer was one big non- event as we did nothing but load the kids and dogs into the van, over and over again, to vacate the house for showings and open houses. We have just one more week and if it's not sold we're taking it off the market for the winter.

Here's a little Audrey video. I have updates on all the kids in draft that I will try to complete and get posted!

School clothes

I don't know why it is, but Angela only likes boy clothes. Unfortunately for her boy jeans don't come with room in the hips and seat that she needs. But shirts? Forget pretty girl shirts. No, this girl wants boy rugby shirts (its all about the stripes) and is usually found wearing Axel or Abel's t-shirts instead of taking one from the stack of t-shirts on her own shelf. And baseball caps. ugh! They do a number on her hair, that's for sure. It never fails that I'm rounding up everyone to leave the house when Angela comes around the corner with a baseball cap on that 1) I'm not going to get her to leave behind and 2) If I do get her to take it off her hair is a rats nest underneath with a serious case of hat head that I swear happens just seconds after donning said hat.

Another thing about Angela is she never ever ever ever ever ever ever stops talking. She even talks in her sleep. Non-stop talking, which is her form of verbal stimming, combined with looking through the Lands End catalog that just arrived could seriously drive me to drink something besides hard apple cider.

This is happening now, as I type: (grammatical errors made to match Angela's speech)

3:09 "Mom, I want this shark shirt. Its cool. And this blue shorts. Ok?"
 (walks back to island with the catalog)

3:11 "And this shirt with stripes. Oh yeah! I need this backpack. Great idea! My favorite. I get two backpacks. Yes two. I get one backpack for me. Only one.
(Back to island)

3:12 pointing to shirts "I need hockey. And basketball. I get hockey Or basketball. I get hockey....basketball...hmmm...what should I get? I love basketball. I love hockey. Or soccer! I love soccer mom! Mom guess what? I can do soccer, hockey and basketball. I choose? Hmmm I choose...I choose floor hockey. And one backpack. Yeah, I love basketball backpacks. With soccer ball in it.

3:17 Mom. Mom. Guess what!  I choose this one. Basketball. I'm showing you. Look. See? I choose basketball backpack. YES!!!! I'm getting it. I love basketball. Basketball it is. Hey Christina! (I have no idea who Christina is but she is apparently in the same room as us) I'm getting a basketball. backpack with striped shirt. Yes. Yes I know. Its so cool right Christina? Mom, Christina wants a hockey backpack. Yay!! Christina! You getting one too!

The Dog Park

There is a really neat dog park near us. 25 acres of dense woods with groomed walking trails, a large open field for playing a good game of fetch, and lots of waste stations to make any necessary deposits. A few years ago Dean and I would take the dogs to the park almost every morning. The dogs loved the park. I am not ashamed to brag a bit, and say our dogs were always among the most well behaved dogs there. I don't remember when we stopped going to the park, or why, but we did. At some point it was no longer part of our daily routine. I feel a bit guilty for that.

Tonight I decided to take Dudley back to the park he loved so much. He's 10 years old now. A gentleman. As we walked in among all the other dogs greeting this new guy, he walked right past them. Not about to be impolite, he let them sniff as he walked by. But Dudley was with his mom, and his mom was walking. Although a tear silently running down her face, she was walking.

Dudley remembered the park. I could feel him remembering places as he sniffed here and there. Only twice did he leave his mark because mostly he was intent on being by my side. Occasionally someone would meet us on the trail, their dog running ahead to say hello to Dudley, but he just kept walking. My super-social dog ignored the other dogs, and the other people, never giving anyone a second look except for one handsome young couple, the young man in particular. There was something about him that Dudley recognized or was alerting to. "Funny." I said. "He hasn't said hello to anyone here tonight, but he is intent on greeting you."

"Oh, probably because I have treats!" the young man said.

I watched my boy. I listened to his silent thoughts.

"No. He didn't indicate you have treats, and he doesn't care about them. He's trying to tell you something you probably don't know yet. If there is something you need confirmation about, he just gave it to you."

I wanted to say, "Maybe you have cancer! He told me I did. He loved me through it. Maybe you just made a big decision and he's telling you its ok. Maybe you have a baby on the way and he's telling you now. Maybe...."

But the young couple probably already thought I was nuts so I held my tongue and left them to wonder about the crazy lady with the tears in her eyes.

And we kept walking.

We were only half way around the park when I noticed Dudley had slowed down quite a bit. Already tired. Even though I had released him when we entered the park he still stayed in perfect heel position, his big furry, bear-like feet matching steps with mine. I slowed my steps, savoring our time together.

When we made it back to the gate I broke the rules, letting Dudley through the double fence off-leash. He never left my side as we walked to the van, waiting patiently for me to open the door before hopping in.

And then Dudley did a very odd thing. As we pulled out of the parking lot he turned backward in the seat, watching the dog park as we drove away. With tears streaming down my face, I watched him in the mirror. Dudley stayed there the entire drive home. Watching the world behind him, as if to get one last look. I have no doubt that he knows tomorrow is goodbye forever. 

Tomorrow is Goodbye

Tomorrow is goodbye and I'm having a very rough time with it.

Tomorrow we will say goodbye to our dear companion Dudley. How wrong it feels to schedule an appointment for such a thing.

Two and a half months ago Dudley was diagnosed with hemangiosarcoma of the spleen. At the time the vet said he had only a couple of weeks left, only two days later he rebounded. Now he is running around here like nothing is wrong, acting perfectly fine. Not acting sick. He does have a day here and there where he seems to be going downhill, only to bounc back; a classic progression of the disease.

But Dudley is of Golden Retriever blood, and they are super stoic dogs. Like his mom before him, Dudley won't admit that he is sick and will just keep going and going like all is well in his world. Until I leave. Dudley is my caretaker. He stayed by my side through many things over the years. He alerted us to Angela's seizures and to Audrey falling out of her bed. He loved Axel through his days in the halo. To keep him out of mischief we used to kennel him whenever we left. Then one day, a few years ago, he chewed, pushed and clawed his way out of a heavy metal wire crate. We bought a new one and he did it again. We thought he had developed separation anxiety, but, looking back, I think Dudley knew I was sick before I did. His anxiety started about the same time cancer started growing in me. Dudley stayed by my side through chemo, and one day was licking my bad head as if to say, "Its ok Mom. It will come back. I would share mine with you if I could."

About the same time Dudley was diagnosed with cancer, there was a mysterious problem in our house and we couldn't figure out which of the dogs was doing it. Whenever we would leave either Dudley or Zuri was peeing on the kids beds. Never ours, only the kids. We just closed the bedroom doors and that solved the problem. Unfortunately there were times we forgot to close the doors, which meant spending money on a new mattress. Again. A couple weeks ago we noticed Dudley's anxiety as I'm getting ready to leave is through the roof. He does not like to be alone anymore. He wants to be by my side every moment of every day. And I love having him by my side, it just does not work when I'm going to the store or other errands.  A few weeks ago I told him we were moving, and that its ok to let go if he didn't want to go with us to the new house.

Then, on the 4th of July we came home after fireworks to find Dudley had tried to chew through one of the brand new bedroom doors in his attempt to get to the bed. He didn't just chew through the door, but also the frame and trim. And then, at some point, he found the basement door open and a bed there. Only when we discovered it we also discovered that he was peeing blood.

It is time.

My poor Dudley.  So gentle. So patient. So soft. When I look in your eyes I see a person there. A person who understands everything there is about me. I love you buddy, so very very much. I know you don't like feeling afraid or worried when I'm away. I want you by my side for always and forever. But your mom Rubee is waiting for you.  Can you hear her? Can you already see her, with her slow, low, tail wag, waiting to play with her son again?

How will we stand the wait?

We did it! Today we signed a purchase agreement on our new home! Of course, it is contingent on the sale of our current home, but still. OMG I'm so excited!!!

I had to stand at an angle from the house because of the sun, so the picture does not do it justice. As you can see it is currently under construction. It is due to be completed the end of July. We set a closing date for mid August but can move it should we need to according to the sale of our current house. I just want to be in before school starts. The kids who understand are very excited! We've been talking about "the new house" for several weeks and I'm pretty sure by now they think we're a bit cray cray. We have the access code for the house so sometime this week we'll take the kids over for their first look around. 

Where did the time go?

A couple years ago I had a dream. One of those very vivid dreams when you wake up and can't believe it wasn't real. In my dream I was holding my son Noah in my lap. He was a toddler, wearing my favorite outfit I loved dressing him in at the time. I could smell his hair, feel his weight in my lap, feel his tiny hand on my face. I woke from the dream sobbing tears of anguish. I wanted the time back. I wanted my baby boy back in my lap where I could hold him and keep him safe. I worried this dream was some warning or premonition that something terrible had or was going to happen. I sat at the dining room table and closed my eyes and I could still feel all of it. It was several days before the sensation was gone.

Last night I had the same dream, only this time it was about Angela. I could feel her fuzzy hair on my cheek, her hand on my ear, pinching the lobe as she liked to do. My heart ached to go back in time. When I awoke I realized the purpose of the dream. It reminded me to cherish the times I have with my children.

...to pay attention to the little things.

...the feel of them in my lap.

...their hands on my face.

...the light in their eyes.

...the sound of their laughter.

Next week Angela, my biological baby, will graduate from high school. Some of you have been reading here since the beginning. For 10 years I've been telling you the story of Angela's life. I look back at it all...the good, the bad, the difficult, the tears, the triumphs, the smiles, and I am happy.

I can't say I'm sad to see Angela's high school years come to an end. I no longer have to fight for her to be included. I no longer have to worry if people are nice to her in school. There have been many wonderful things about high school too, and Angela really liked it there. That's the most important part, right? That she liked it?

My darling daughter. My tomboy princess. Thank you for teaching me so much over the past 19 years.

Pt 4: Celebrating our family

 Please join us in welcoming Amos to our family! 

 "Amos" (not his real name) is 10 years old and, like our other kids at home, he has Down syndrome.

So now we have triplets. .Ten year old triplets who could not be more different from one another.

We love you Amos! We can't wait to show you to the world!

(Since I know there will be plenty of questions, let me just say I will not be posting details about his first adoptive family, or why he was placed with us. When the adoption is final we'll be able to post full pictures of him and use his real name. Since I know it will be asked at some point, and the haters are still gonna hate, I will just say that yes, I can still go anywhere by myself with all the kids. :-)

Sometimes it doesn't work Pt 3

There are lots of big secrets in the adoption community. The first is that adoption can be hard. Really hard. The easy part of the adoption is the adoption process itself. If you are in the middle of your first adoption process and kind of stressed out about it, be prepared. This is like early labor pains.

In my second post in this series I talked about another big secret: adoption dissolution.  It is a difficult concept for some people to understand. A few people commented on my Facebook wall that they used to be the people who were horrified that someone would dissolve their adoption, giving the child away to someone else. Then they themselves adopted a child who wasn't easy, and they now consider themselves enlightened.

Let me talk about the child for a bit, since he or she is at the center of it all. Let us never forget that no mater what, the child is always the victim in the case of adoption dissolution. The child, no matter how socially, emotionally or psychologically messed up, is nothing more than a product of the crap circumstances he or she was forced to endure. Chronic abuse, starvation, numerous rejections and neglect of all kinds before being adopted can and will do a number on a child's mind, body and spirit. Behaviors that are learned and ingrained in the child can destroy a family. The behaviors can fall into the category of "very annoying" and not harmful, or they can put the adopted child or other kids in the house at risk. The child cannot help it, and healing can take years, or decades. Sometimes... Sometimes healing never happens. Unfortunately there are some things about a child you cannot know until they are already in your home. Even-so It is up to the adoptive parent to assure the child's needs are met, no matter what. No matter what kind of behavior is displayed, no matter how much the child gets on your nerves, and even when that behavior puts other children in the house at risk. If the adoptive parent chooses to dissolve the adoption, it is parent's responsibility to know where that child is going and with whom. To make sure all legal processes are followed according to state rules and regulations.

So the family chooses to dissolve the adoption, how do they do it? It can happen many different ways, using county placement services, foster care, or private placement. I don't know which, if any, is more common. Personally I hear the most about private placement using a private agency or adoption attorney. Several states now have laws in effect that require Social Services to be involved in a situation where a child is placed with a non-relative. In many states homestudies and background checks must be done as with any adoption and ICPC regulations for each state must be followed.

There is one more secret I want to tell you about.

In the case of private placement, in an effort to protect the first adoptive family from judgement and ridicule, the second family often goes through the adoption process very quietly. There is no big announcement of "Meet our new child!", and any celebrating is done only with those close to the new family. And that, my friends is the purpose of my dragging you through three blog posts. Don't get me wrong, I don't like dissolution, but I understand there is a time and place for it. I also understand that every child deserves to be celebrated. Every parent, whether adoptive or biological, deserves the right to celebrate the addition of a new family member, which brings me to part 4. I promise, its the last one!

Sometimes it doesn't work Pt 2

For as long as we have been part of the adoption community - a year or so prior to our first adoption - we have known there was a need for adoptive families to access respite care for their adopted child. The reasons are as varied as the children and parents themselves. Maybe the child never sleeps and the parents need a weekend to do nothing other than sleep. Maybe the child has very high medical needs and the parents need a few days to rest up and recharge without constantly responding to the next pump alarm, diaper blow out or tube feeding. Maybe they just need a few hours to reconnect with their spouse. Sometimes the situation is a bit more extreme; a family seeking counseling to get their feet back under them, or a family considering dissolution.

A few months ago Dean and I made the decision to open our home to adoptive families who need respite for whatever reason. Every parent, no matter how amazing, no matter how much patience and training they have, needs a break. . And its not even just the parents! Often the entire family needs a break! Unfortunately not all kids are cute and adorable, particularly if they are post institutional children. Some of these kids can be really difficult to find outside care for. I know, we know, because we have a child who cannot be left with just anyone. We have a child who may be amazing for us, but for anyone else - including school staff - immediately reverts to a feral state the moment we are out of sight. There is no such thing as getting a sitter for this child. And so Dean and I chose to become "those people" who aren't really phased by a kid who struggles to function while his or her parents get a much needed breather. We have also offered respite to families who are barely hanging on by a thread, who's marriages and/or families are falling apart around them. In these situations we request the family be seeking counseling services, being proactive in their attempts to keep their family together, while we are providing respite.

Adoption dissolution, sometimes referred to as disruption, is not a new phenomenon. It is not even rare. I think most people would be shocked to know just how often it happens, mostly because nobody talks about it. It is the deep, dark secret of the adoption community. Adoption dissolution is so common that every state in the US has attorneys who specialize in the process, who are specially trained in the laws of ICPC regulations (Interstate Compact on the Placement of Children). However, with the advent of social media, first with blogs, then Facebook and other ways to connect, people are hearing about adoption dissolution for the first time and are shocked this could be happening. Again, its not new. Maybe just new to you.

I think it is difficult for those who have never adopted, or who were lucky enough to adopt an "easy" child, to put themselves in the shoes of the adoptive family in crisis. If you have a biological child, think back those first few months. Maybe you had a really colicky baby and you were frazzled to no end. Now imagine doing that with a child who you have no connection to...or...gasp....who you may not even like. Maybe you had a baby who was super easy, and you looked at your friend with the colicky baby, saying to yourself, "Thank God that's not me!" Now, substitute "new baby" with adopted child.

As I mentioned above, adoption dissolution is the dirty secret of the adoption world. Why? Why the secret? Because of those who have no compassion for the failures of humans. I don't know of anyone who adopts a child and disrupts, who does not spend months in agony over the decision, tearing themselves apart about what they could have done differently, better, faster, or not at all. Some who regret the decision to adopt in the first place. And of course, there is human pride. "I failed." There is much judgement that cannot be avoided. Some families move to other communities where the neighbors don't know a child is missing, some change churches, others just stop talking to anyone, leaving their biological children to answer the questions of others. If you can imagine a situation, it has probably happened.

But what happens next? Where does the child go? That child who wasn't bonding or was difficult to manage. The child one family could no longer care for?

That's the other secret... Part 3.

Sometimes it doesn't work Pt 1

Imagine walking through the city streets of Anywhere, USA when you encounter a group of homeless street children begging for food or money. You ask each of them their ages. There is a wide range, from three -15. You think of your home, your family, the empty seat at your table and the empty bed in the guest room. "I could do this" you think to yourself. You choose a child based on his age because that is really all you know.

 You go through the legal process to bring that child into your family. Everyone in the house is excited! Your children are excited about another sibling, maybe even to share a room with him or her. Your spouse is excited because there had been discussion about another baby but nobody was sure about going that direction. The new child is excited to have a family, with many hopes and dreams that will finally be satisfied by that word, "family".

And then the child comes home.

You discover it is hard to love a total stranger. It is hard to have a total stranger come into your home and just "know" how the house functions. This child, who has never had a family has spent his or her life fighting for every need and doesn't know how NOT to fight. Property destruction is a daily, sometimes hourly occurrence. Screaming, tantrums, aggression towards self and others, and the list goes on. Months go by and your biological children are unhappy because their peaceful lives have been turned upside down. They resent this new sibling. Your spouse had no idea this child was going to come with the issues he or she has and they are not getting resolved as quickly as everyone expected. Your friends adopted a child with similar needs and they are not still struggling months later! Surely you're doing something wrong? Surely there is some therapy or medication or...or....something that will help this all get better.

Finally the family reaches the point of crisis. The family unit is disintegrating. People are walking out, both kids and adults, because the stress has become too much and there is no help available. Nobody seems to understand how one child can cause such upheaval. In your head you know it is not the child causing the damage, but what is it? Is it an inability of the child to bond with the family? Is it the inability of the parent to bond with the child? Is it lack of experience? Training? Unrealistic expectations of adoption? Is there even an answer?   You feel like a failure. You have failed your children, your family, the adopted child who you promised a family who would love and adore him or her. Can you repair the damage done to each of the family members? You know the family needs counseling but where do you seek such counseling? You reach out for help even through fear of being judged; even though people will say you didn't try hard enough. Long enough. You didn't act fast enough.

You reach out.

Little Girl at the Piano

Four years ago, my friend Hope Anne and I became very close phone friends as she prepared to travel to Ukraine to adopt her new daughter Katya. Let me tell you a bit about Katya.

Katya was born in Ukraine with a skull that was badly misshapen and in need of surgical reconstruction, not only for cosmetic reasons, but because her brain did not have room to grow. This early fusion of her skull plates caused Katya to suffer chronic, migraine level headaches. Luckily for Katya, she was living in a Ukrainian orphanage where she was severely neglected and malnourished. Since she wasn't growing neither was her brain. Luckily for Katya, she wasn't having headaches yet. Well at least not that anyone knew.

Because Katya was severely neglected and malnourished, and because the orphanage staff didn't actually talk to her, Katya never developed language. She didn't have the ability to tell anyone if her head hurt or not.

Luckily for Katya, she didn't really need language. Not only was she severely neglected and malnourished, but when she was adopted at the age of six, there was no such thing as "school" for her. She had never had even a tiny bit of exposure to anything educational. Katya had never seen a crayon, held a pen or pencil, or been handed a book. 

Because she was severely malnourished and neglected, Katya was often the victim of assaults by the other orphan children who, though malnourished themselves, were much bigger than her. Survival of the fittest is something children who live in orphanages know well, and Katya was anything but fit. 

Katya lived in a primal fight or flight mode. Without language her only way to communicate was through screaming, scratching, hitting or kicking. She wasn't a pleasant child to be around and the caregivers frequently bullied her for no reason other than to release their frustrations. Never loved and certainly never cared for, when her family arrived to adopt her Katya had no idea how to sit in a person's lap, much less accept love and affection.

Katya was a feral child. 

Katya screamed, and screamed and screamed some more. She kicked, scratched, choked and bit. Katya fought for her life. She fought the family who promised to love her and care for her no matter what. Like a wild animal confined to a cage for years on end, Katya paced back and forth in her new home. Home one year when I first met her, Katya was still pacing. She was still screaming. She was still learning what it meant to be loved. She was still learning to feel love, and she was afraid of it.

I want you to understand the sacrifices an adoptive family makes when they choose to love a child like Katya, because I can tell you from experience, this is not a "love at first sight" type of adoption. When a family adopts a feral child, the family has to choose to love the child. They choose to accept scratches instead of hugs. They choose to confine themselves to home for weeks on end, all for the child who has never had exposure to the outside world and isn't yet ready to experience it. They to choose to listen to hours and hours of screaming, keening, and crying. The family chooses to watch their home be destroyed item by item as the child learns to function in the world. The family chooses to put the value of a child above the value of possessions, vacations, popularity or community status.

I want you to understand that a family adopts a feral child because they understand the child has value even when nobody else can see it. Even when the rest of society asks, "But why is this my responsibility?"

But as much as I want you to understand, I want you to see. Something so simple. Something so pure and innocent as a little girl having her very first piano recital at 10 years old. Four years of love and sacrifice. It is only a few short notes. Turn the volume up on your speakers and you may hear a tiny, shaky voice trying to sing along with those few short notes. Remember that these few short notes are possible because of all the sacrifices made by one family. But my favorite part of all the smile of pride as she runs back to her seat. 

Pride. Sacrifice. Joy. Patience. Acceptance. Choice. Love. Katya.

If you would like to read more about Katya and her family, her mom Hope Anne blogs at Welcome Home Katya.

The Big Switch…take two!

When we brought Abel home two years ago, we had all the boys in the second bedroom and Angela was still in the basement bedroom. Some of you have been reading here a long time and remember that as the Pirate Room. Unfortunately I wasn't happy with where everyone was and  "The Big Switch" happened, and everyone moved to different rooms! When we brought Audrey home last year it was very easy to move her into Angela's room. Because we use the Ikea Kura beds, we had only to flip the bed over to make it into a bunk bed. Easy peasy! Eventually Dean and I even got used to sleeping in a queen bed in the very small bedroom. Ok, maybe not the small bedroom part.

But then a couple weeks ago we decided we need a different house for our family. We would like to be able to provide short term respite for adoptive families who need a break, plus the property where we live now just isn't working well for us as a family of 7. Plus we have Angela's graduation party coming up and I just wanted things cleaned up a bit.

And so "The Big Switch Back" has started! 

Getting the rooms cleaned out and moved around to put the house on the market, in addition to all the school activities for the kids, after school sports, doctors and therapy appointments means I have been one busy mom. While I've been doing that stuff, Dean, Tyler and Bryon have been working on the maintenance projects. Why is it these kinds of things don't seem to get done until you decide to sell your house? Or have a graduation party for your oldest daughter? And where does all this STUFF come from?

Apparently we are hoarders because tucked away into every corner of this house there is more crap than I ever could have imagined. A couple months ago I read the book, "Life Changing Magic of Tidying Up, the Japanese Art of Decluttering and Organizing". If you haven't read this book yet, I highly recommend it. The premise of the book is about only keeping things which bring you joy. It is not about what to get rid of, but about what to keep. When I read it the first time I got anxious thinking about all the stuff in my house that did not bring me joy and how I couldn't wait to get rid of it all. So, as I purge the house for moving I am following this method and only keeping things which are necessary and/or bring me joy.

How about you? Are you ready for a purge? Have you read the book or are you interested in it? 

Happy Mother's Day

Happy Mother's Day to all the moms reading!

There are probably some new readers here who have come from the Pioneer Press article about our family. Let me give you a little tour:

Some are curious about life juggling kids and cancer. You can read all posts related to breast Cancer by clicking on the Breast cancer label in the left sidebar.

If you're hete to learn about our adoptions, or the Serbian adoption process, you will want to move over to our adoption blog.

Thanks again for paying us a visit here. I hope you stay awhile! 

Decisions

Dean and I recently made a really big decision. Although I am very excited about the possibilities ahead of us, the work involved may cause me to have a nervous breakdown! If only I could put our lives on hold for the next month or two.

We're hoping to have the house on the market by June 1st. You know, in the midst of Angela's graduation week and all that goes with it. We need a different space but are not going far. We don't want to change any of the kids' schools. Although we haven't found a new house yet, I have absolutely fallen in love with one I think is perfect for us. I love the space, the lot, the location, the kitchen, the bedrooms….everything… It makes me giddy thinking about it. But we can't even make an offer on anything until June 1st. And, well there is this small problem with Dean's opinion of it. We'll see if its even still on the market at the end of the month. 

The week that Dean left town

Audrey and Abel had their surgery on April 7th.

On Saturday I took Angela shopping for her prom dress.

On Sunday Dean went down to Arizona. His parents own a condo there and that's where they spend their winters. Dean was helping them pack up then help them navigate the airport and fly home.

On Monday morning Angela got up from school very pale and running a low-grade fever. She's had a bit of "Monday-itis" several Mondays in a row, only she is truly not feeling well. (Its very odd and makes me wonder if there is something in the house she's reacting to.) Anyway, I kept her home and she ended up sleeping all morning. About 10:00 Axel's teacher called and said he wasn't feeling well, and neither was his interpreter. Around noon Angela woke up saying her head and neck hurt really bad, and she didn't want to turn her head at all. She also didn't want to wear her glasses, I think because of the migraine. It was time for us to visit Dr. Mary.

On the short drive over Angela started acting very strange. She was moving her hand in front of her as if she was wiping off a window, "My eyes is foggy." she kept saying. I took this to mean her vision was blurry. Then she started talking NONSENSE and doing a weird shaking with her head. I asked what she was doing. "I don't know. I'm shaking my head but I don't know why."

When I got her out of the van we started walking to the clinic door when she dropped to the pavement. I tried telling Axel to run in and get someone to help but he didn't understand what I wanted. After a few seconds she was able to stand back up though I was supporting a lot of her weight. I waived at the receptionist and said, "We're going straight to a room!" and kept walking.

In the exam room we got her up on the table so she could at least lie down. Her temp was still 101 with Tylenol and still she complained about her head and neck. We did some blood work and a strep test, which was clear. However, the doctor looked in Axel's throat and he had a real mess going on in there. He tested positive for strep. Given Angela's history the doctor wanted me to take her to the hospital, and she called ahead to let them know we were coming.

She was in bad shape when we got there. Her blood pressure was down to 60/40 and she was extremely dehydrated. (The ER doctor later told our ped. that we should have been transported by ambulance but her blood pressure wasn't that low in the clinic.)

We ruled out all kinds of things, including leukemia since her white count was at 28,000, in order to arrive at doing a spinal tap to test for Meningitis. Although three doctors had listened to her chest by this point, and all said she sounded clear, the ER doctor decided to do a chest X-ray to rule out a sneaky case of pneumonia.

And he wins the prize!

Unfortunately that hospital had no beds open so Angela was transported by ambulance to the partner hospital. Angela is all about medical stuff, and ambulances, etc so she was thrilled to get a ride!!! When I arrived there a short time later two doctors were in her room. That's when I was informed she not only had pneumonia, but a quarter size "pocket" of something they could not identify. It did not look like a mass, but some type of fluid. They asked if she had been exposed to anyone with TB. They also asked how long Audrey had been home. It was one year last month. Both doctors exchanged looks then wordlessly left the room. When they returned a few minutes later they were fully gowned, had face shields, gloves and booties. They didn't *think* she had TB, but it was possible and they weren't taking any chances.

So let me recap a bit: Angela is admitted to the hospital at what ended up being 2:00 in the morning. I had four kids at home, one of whom tested positive for strep. Dean was out of town. Luckly of all the kids to be hospitalized it was Angela this time. The one who always says, "Just drop me off at the door" and is disappointed when she doesn't get admitted!

As it turned out all the kids ended up testing positive for strep. I had my pre-op physical and begged my doctor for antibiotics so I wouldn't have to cancel my upcoming surgery. Dean came home in the early morning hours on Friday. On Saturday Angela was very disappointed to discover she had missed her prom, and on Sunday she came home.

The final verdict of this hospital stay is this was a bad episode of aspiration pneumonia. Angela's swallow has gotten MUCH worse, and we need to get her back to Boston to visit Dr. Nurko. He is the only doctor in the country who will treat Angela and her Cricopharyngeal Achalasia. The pulmonologist here, who works with people who have achalasia of the LES, doesn't want to touch her because she is high risk. The Pulmo here, who trained under Dr. Nurko and now has a manometry clinic here said no, Angela needs to back to Boston. ASAP.

Insurance says no.

I spent the past week both recovering from surgery and arguing with the insurance provider about getting Angela back to Boston. Guess what I'll be doing more of this week?

Long overdue updates

I don't know how many times I have come to update, only to realize I have no idea where to start. There is SO MUCH going on in the Garden!

I guess I'll start where I left off.

Here we are, 4 1/2 months into 2015 and our life is not looking the way I pictured it. There are already surprises, changes of direction, and "Oh my gosh!" moments that cannot be anticipated years in advance. Thankfully Dean and I are pretty "go with the flow" people!

In February I posted about an upcoming surgery Abel and Audrey would be having. The same exact surgery for both of them. Audrey needed one knee and both ankles fixated, and Abel need both knees and both ankles. The surgery went well, the recovery a bit interesting.

Abel's surgery was done first. Given his history of being very combative when coming out of anesthesia the staff had Dean and I go back to the recovery room long before he was awake. Ours were the first voices he heard and the first faces he saw when he opened his eyes. He didn't complain much about pain (and he is one of our kids who DOES tell us when he is in pain.) A short time later they told us Audrey was starting to wake up in the next cubicle so Dean went to be with her, since she is a total Daddy's girl!

We had driven separate, thinking that one of us (probably me) would go home with Abel who was ready first. It is always good to be flexible with your plans! HA! Abel said he had to use the bathroom so Dean and I wheeled him over. The dr. said there were no restrictions and he could stand and walk if he tolerated it. Dean and I each stood on one side of him holding him under the arms as he stood up pretty quickly…and promptly fainted. And then threw up.

There was no walking after that.

When Audrey was done and ready to go home she was not at all willing to bear weight, so we wheeled them both out to the van and got everyone loaded in. Abel constantly looking like he was going to pass out or throw up. It took both of us to get Abel into the house and to the couch, but it didn't take more than an hour before he started hobbling around, and throwing up anything we tried to give him. Within a couple of days he was walking normally again.

Audrey was another story. It took her nearly a week before she was willing to put weight on her legs. Her right ankle was swollen for days, but even when it went down we couldn't get shoes on because they rubbed on the incision.  Her foster family in Serbia had sent Serbian house slippers along. They are much more flexible and zip up the side. They are cut just right so they didn't rub on her incision at all. Three weeks out there are still some mornings when she's a bit stiff and sore but once she's up and moving she's fine.

The kids have check ups with the orthopedic surgeon this week for X-rays and to check progress. I'm curious what he has to say about the occasional swelling that Audrey has. With all of this I decided even if they're ready at the same time, there is NO way we are doing the four weeks of casting ankle to hip at the same time. Having two, simultaneously, who could not bear any weight was too much for this mom. Lesson learned!