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Monday, June 27, 2011

Minor set back in lip healing...

It seems our little Mary is unable to catch a break. Last Tuesday I noticed a slight swelling on her upper lip and what looked like a little pimple/blister. It was very small, but Mary would point to it and say "Owww". We had a routine follow up appointment at the plastic surgeons the next week, but something didn't feel right to me. Cory called the surgeon's office and they fit us in that afternoon. Cory wasn't certain anything was amiss, but I insisted that I wanted it checked out in order to catch something before it happened, rather than playing catch up once it already occurred (or as Cory would say, trying to control things I have no control over!).

Anyhow it seems we went a couple days too early because the nurse and plastic surgeon did not see anything wrong yet, and thought that what Mary was feeling was the scar tissue building below her skin which does irritate some children. Mary's "blister" continued to grow over the next couple of days until it finally burst on Saturday morning, which then was actually more comfortable for Mary as the pressure was gone. I am thankful for a good friend who is currently going through this with her daughter, as she was able to provide me some much needed reassurance and cleaning care suggestions, preventing this over protective Mama from going to the local ER in the small little town we were visiting Grandpa and Grandma for the weekend!

At our scheduled appointment today the surgeon and nurse were able to confirm that Mary does indeed have an abscessed internal stitch. For some reason the stitch did not dissolve completely  and the body is now expelling it out. The surgeon did use some tweezers to help dislodge some material, which was not very much fun for poor Mary or her Mama (who really does not enjoy the sight of blood coming from her own child). The plastic surgeon and nurse were very kind to us and very gentle and sweet to Mary. I was worried about this affecting her scarring, which the surgeon said could happen, but was reminded again that Mary will most likely have revision surgery in the next year or so which will correct any effects from this.

Right now we are keeping the area clean by using peroxide and antibiotic cream several times a day. Although the area bothers her, Mary is a trooper and her sunny personality is not letting this get her down. Everyone at the surgeon's office today commented on her spunk and utter joy that she exudes.  
       
Last Sunday...

Today, a week later...


Once again, still lovely and beautiful, but - I just wish she could catch a break.





Thursday, June 23, 2011

Our girls...

Warning: Serious cuteness ahead - be prepared!
 

And my personal favorite from the day...

Sunday, June 19, 2011

Just chugging along...



We are now almost 5 weeks after Mary's surgery. Mary is doing great and has been busy enjoying the sporadic spring/summer weather when it comes our way.

First time playing in the sprinkler...

 Hiking with my friend Victoria...we need to pack bug spray next time!

We visited with our Speech Language Pathologist this week through our local Early Child Development Center. I really like our SLP, she is very professional and is very easy to talk about speech and language related issues. We first met our SLP when we came home with Sylvie, so we have had a working relationship with her for almost two years now. I am impressed with the rapport she has built with both of my children in such a short period of time, and both girls have enjoyed working with her. Sylvie has met all her goals of speech and language so she does not require any more service in this area, however with Mary, her cleft will require support for speech development.

Mary has met with our SLP before, the first time was about two weeks after arriving home from China to do an initial intake assessment. Our second visit was right before her first surgery in late January to determine which letter sounds she was making before having her premaxilla correctly placed and lip closed. Our third visit was this week one month after Mary's successful surgery.

At this time it seems that Mary is doing great with language, she understands questions, responds to directions, and communicates with others through words, gestures, and eye contact. Mary has easily over one hundred words in her vocabulary and is beginning to combine these into two or three word sentences. We would say that we understand what she is saying about 70% of the time, but this would be much lower for other people. While she is doing great with language development, Mary will require support in developing her speech however. Now that her lip has been attached, she needs to learn how to use the muscles to move her lip to correctly form different letter sounds. Mary is doing great with her vowels and several letter sounds and combinations, and with continual practice they are very clear. Her next goal will be to work on certain constant sounds that she was unable to say before surgery (ie, p, b. m, t,s). Our SLP modeled lots of fun ways for us to help train her lip muscles such as blowing feathers, bubbles and whistles.

A second goal for Mary will be to learn how to drink through a straw. This is a bit challenging for her since she has to learn to cup the straw tightly with her upper lip, as well she still has two small fistulas behind her gum line into her nose which make creating a vacuum seal challenging. So far Mary has been VERY determined to learn to drink through a straw like her big sister. The SLP has given us some straws with a valve in them. These special straws look like regular straws, but have a valve in the bottom, and once you suck up the liquid to the top, it holds the liquid in the straw. So far Mary has had some success sucking through the straw, but it takes her about 25 minutes to drink about 2/3 of a cup of juice. She is determined to do it however, and does not want to stop or take a break. We are always impressed with her perseverance and stamina ;)


 We had kind of hoped that Mary would instinctively know how to suck on a straw after surgery, but this was not the case. We were struggling with how to explain to her to suck exactly. Another mom on an online support group for children with clefts shared that she demonstrated sucking her daughter's finger and then had her daughter do the same to her. This was a great suggestion because we could then feel when Mary was sucking on cheer her on. Right now Mary is inhaling through her nose each time she is trying to suck up, which is what is taking so long for her to drink through the straw. We'll give her more time to practice however and are confident she will figure this out.     

Monday, June 6, 2011

Jammies from Grammie!

We have been very busy at the Drinkwater house lately, with Mary's surgery, recovery time and then finally...summer weather has arrived. However, I found a few minutes today to down load all the pictures from the past month and found some cute ones. These pictures are from May, just two weeks before Mary's lip surgery.

Look who's got some new jammies for night time!

Grandma Shirley has been busy sewing up some new jammies for our little girls, and they are just too cute not to share!

I had a little grumble and giggle when going through these pictures. You see, we have a "rule" about not sitting on the book shelf on the beds. Yet, it appears Daddy was either not *aware* of this rule, or he thought it would make a good photo opportunity.

So I didn't expect to see this... 
Or this... I can almost see Sylvie's smirk of satisfaction on her face!
What are you doing next Sylvie? 
 What? Standing on the bed, or is that jumping?!? Yet another safety "no...no".  
Oh well...it should be an interesting conversation at dinner tonight when I causally *inquire* about these pictures to Daddy! 

Thank you Grandma Shirley for the jammies! 
We liked that you picked fabric with kitties on them for us.







Tuesday, May 31, 2011

Post Operative Pictures, Take Two...



On our previous post, Post Operative Pictures... we showed pictures of Mary's healing from surgery day until five days after. We are now thirteen days post surgery and Mary has now had her external stitches removed this afternoon, and although she did shed a couple tears, we were very proud of her.

I know some will wonder why we would share these pictures. Firstly, to help Mary understand the journey she has been on. One day she will look back and be able to see how strong she was to undergo these procedures to help give her a better opportunity for speech and language development. I was reading online about facial clefts, and there was a figure given that stated 70% of cleft affected individuals have no pictures taken before surgery. I am not sure if that figure encompasses cleft affected children today, or if it in fact refers to a survey taken of now adult age cleft individuals. We strongly feel Mary was beautiful before her surgeries, all anyone had to do was to be around her and they soon realized she lit up the room with her presence. These pictures will help document for her the stages of healing and recovery she has gone through, there is nothing for her to feel ashamed about.

Secondly, when we decided to adopt a child with a cleft, we began doing our research in earnest. We joined an online yahoo group for families who have adopted a child with a cleft. There are many unique features and challenges that our children share with regards to surgery options and language development as their cleft most often was not corrected early in life. From this group we have received fantastic support, and benefited from the knowledge and advice other families have generously shared regarding their child's journey to correct their clefts. We feel it is important to also reciprocate and help other families as well. One of the ways we were able to help prepare Mary for surgery was by showing her pictures of what her lip would look like. We hope other families will be able to do the same.           

*Please disregard the quality of some of the photos, this has made me realize we desperately need a new camera, and perhaps some lessons on how to use it and edit the pictures we take ;)

Five days after surgery...
Six days after surgery...
Seven days after surgery...
Eight days after surgery...
Nine Days after surgery...
Ten Days after surgery...
 Eleven days after surgery...
 Twelve days after surgery...
Thirteen days after surgery (external stitches were removed this afternoon)...
As you can see, the spunk is back in her step!

Monday, May 30, 2011

Recap of our hospital days...

Surgery Day: Wednesday....
We were up bright and early to make it to the hospital by 6:30am. Luckily Grandpa Cliff and Grandma Diane came the night before, so they got to sleep in until Sylvie woke up later that morning. Mary was allowed one cup of clear fluids up until 7:30am, which included apple juice. We registered at the hospital and were in the surgery waiting room by 7:00.

This time around we put the Emla numbing cream on both of Mary's hands before leaving the house (to make the IV insertion less painful), as last time the nursing staff forgot until just before her surgery. We meet briefly with the operating nurse who went over Mary's particulars and then we changed Mary into some unflattering yellow pj's and went into a new waiting room. The anesthesiologist, two plastic surgeons and operating room nurses meet us in the waiting room and discussed their plan for the morning surgery. The anesthesiologist was the same one who was present at her first surgery, and he gave permission for Mama to take Mary to the operating room and stay under she was under. Mary was a bit more apprehensive going into the operating room this time around but did not cry. Mama sang to her and rubbed her tummy while the IV was inserted. Mary did not enjoy having the mask placed over her face, but overall cooperated with the nurses. She was under quickly and I gave her a quick kiss good bye before leaving the operating room.

Cory and I then went to grab a quick breakfast at the hospital, as the surgery was scheduled to take about one and half to two hours. Afterwards we spent time pacing in the waiting room until the plastic surgeons were finished. Dr. V came out to talk with us and told us everything went really well. We asked when we would know that the surgery was successful in staying together and he said at one week we could be reassured. (It is very rare for the lip surgery to dehiss, but we were not taking any chances this time). Mary was in recovery, and we were told to wait upstairs in the Peds ward for her to be transferred.

Luckily we were able to wait in Mary's room for her. There was another patient but thankfully they were being released shortly. We were able to get all Mary's toys set up and movies ready before she arrived. We were also allowed to have a bed this time around instead of a crib, but needed to sign a waiver form to sign as Mary is not yet three years old.
Mary was rolled into her room just after 11:30 in a rolling crib. She was lying on her side an had tears in her eyes but was not screaming and hollering like last time. The nurse told me she was asking for Mama as they were wheeling her down the hall. As much as it hurt to see her in pain, I was so happy that she recognized us and wanted us to hold her. When she came out of surgery the first time in January, it was a truly awful experience for the first hour together, she did not know us, and was fighting to escape - we had the bruises to prove it. I crawled into Mary's bed and the nurse lifted her down beside me, and Mary wanted desperately to snuggle into me. We were able to keep Mary on her side, but had to make sure that her nose and mouth were not touching me, which was so hard as she wanted to snuggle. She did not want to face away from me either.
We asked about her pain management and they told us she received a morphine shot in the recovery room. We asked about a morphine drip, which is what she had the previous two surgeries and were told that was not ordered and they were only using Tylenol w/codeine now. We were surprised, but I guess that shows us to ask more specific questions next time and not to assume everything will be the same. Mary spent the afternoon dozing on and off with Mama on the bed. In the later afternoon her pain became quite bothersome to her and we asked the nurse to page the doctor. It was determined that we could also add ibuprofen as needed to help relieve her discomfort.     

We remembered from our last hospital stay how much Mary liked riding around in the little race car. So Daddy went and grabbed it from the play room and we did a hundred or so few laps around the Peds ward. You can also see the arm restraints the OT's came to make for Mary. These were to help ensure that she did not touch her mouth or nose during the first few days.
Mary loved the car so much that we ended up keeping it in our room for the next few days. Mary did not enjoy sitting in her hospital bed, even if it was elevated into a sitting position, so this was the perfect compromise.
Mama stayed the night at the hospital with Mary. She received her next dose of Tylenol with Codeine just before 8:00 and she drifted off to sleep. The nurses needed to check her vitals every four hours, which was also combined with her IV antibiotics and pain management. Overall Mary had a good night in the hospital for her first night. Mary was on a liquid diet today. She began drinking small amounts of apple juice in the later afternoon and even tried some milk. Overall she drank about 250 ml of apple juice. 

Day One: Thursday...
snugglewraps.com/

The plastic surgeon Dr. W stopped by right before Mary's nap today to have a quick look at her. He felt she looked great and was happy with everything. He let us know that the plan would be to stay in the hospital for two more nights to ensure Mary had several doses of her IV antibiotics to ensure an infection would not develop in her surgery site.

Mary spent most of the day either in her little race car or in her bed. She needs to be hooked up to an IV to administer her antibiotics. This makes walking around a bit more challenging for her as we need to follow quickly behind her as her IV tubing was not very long. Since she was drinking so well, the nurses did reduce the amount of fluid dripping into her IV which helped to reduce her puffiness. Even though Mary was down one hand, she impressed us with her tenacity to still click her safety strap herself, no IV is going to slow her down!

Another food hit for Mary today were Popsicle bites, where Daddy would break the Popsicle into little pieces and we could pop them into her mouth. So far orange seems to be her favorite flavor.      

Daddy spent the night with Mary tonight. Daddy reports that Mary had a good night, but needed to be flipped over onto her back every once and awhile (poor Mary is a stomach sleeper, this side and back sleeping is hard for her). We are still putting the arm restraints on her for nap times and bed times, but are leaving them off during the day when we are beside her. Mary is doing well with not touching her mouth or nose, but often wants to rub her eyes, which are dry from surgery. So we are reminding her to ask us and we are wiping them down with a warm cloth for her.

Day Two: Friday...
Mary's appetite has returned! Cory feed her breakfast this morning which consisted of oatmeal, yogurt, and applesauce along with a container of milk. We find that it is most easiest to feed her liquid/soft foods using a catheter syringe, which has a nice long tip on it to guide around her mouth incision. The catheter syringes work best with oatmeal, soups and other pureed foods. We use the 10 ml medicine syringes to feed Mary her applesauce and yogurt.

The big excitement today was the nurse deciding to cap Mary's IV. The needle still needed to stay in her hand so they could administer the IV antibiotics, but she didn't need to be attached to the pole anymore! Mary was so happy to walk freely around her room and the playroom. This made going to the bathroom so much easier too, so Mama was very happy as well. I think the nurses were happy too since we spent most of our time in the playroom or walking the halls which drained the battery on the IV machine which required them to reset the IV machine each time we returned to our room to plug it back in. By this time we were already on our second IV machine since we killed the battery on the first one. After being released from the IV pole, this is how Mary spent most of the day in the playroom...


Big sister Sylvie was able to visit with Grandpa Cliff and Grandma Diane. I think the girl's missed each other, but Mary certainly didn't miss having to share toys!

 Riding around in the wagon was a big hit!

Day Three: Saturday...
Mama stayed last night with Mary again. Unfortunately Mary did not have a great night. The Peds ward was VERY noisy last night. There were quite a few new patients being added all night long, and many were on monitors, and the alarms continued to go off ALL NIGHT LONG. Every time the alarms would go off (we could still hear them in our room from next door, Mary would wake up crying. I stopped counting the number of times she was up crying after ten...at that point I think she was so tired that anything would wake her up, including the nurses coming in to check her vitals, which she used to sleep through before. It took me ten minutes of rocking and singing to her at midnight to get her calm enough to take her Tylenol with codeine and her IV antibiotics, and she is usually a rock star with taking medicine. The real bummer was being woken up at 5:30 am to change rooms. Unfortunately they needed a private room for another patient and we were moved down the hall to a room for four patients. I was glad we tidied up the room each night before bed, but it is still a bit disorientating to try to grab everything and move it when you are still half asleep. We forgot the camera in the bedside table drawer, but luckily it was still there later in the afternoon.

When the nurses came this morning at 8:00 to give Mary her last dose of IV antibiotics they discovered that her vein in her IV had collapsed, and the meant the antibiotics could not be pushed in. Since the nursing staff needed to call the doctor anyway to request oral antibiotics, I asked for them to inquire when we were going to be discharged, since today was the plan. We found out the surgeon gave us the ok to go home as soon as we wanted and he would call in the oral antibiotic prescription to our local pharmacy. I quickly called Cory and began packing and feeding Mary her breakfast. Cory was at the hospital by 9:00 and we were back home as a family of four by 10:30. Mary was happy to be home and immediately began playing with her toys.

Even though our last night in the hospital was not fun, we can't say enough about many of the nurses who helped take care of Mary. We were lucky enough to have some of the same nurses as our last stay and they were very excited to see Mary again. However, there is nothing like being at home...


 

Wednesday, May 25, 2011

Two years ago today...

On the other side of the world, in Nanning, Guangxi, we met one of the most beautiful baby girls in the world...

May 25, 2009


You were scared and unsure of us, but you didn't cry (that would not come until a week later in Beijing)


Over the next week we were able to slowly gain your trust and coax some smiles out of you...


We have had the privedge over the last two years of watching you grow and blossom into a kind, caring and sweet little girl...








It has been an honor to be your parents Sylvie, we love you more than you can ever know. You make our hearts sing...

May 25, 2011