Friday Appointment with Mac

We met with the surgeon on Friday afternoon to discuss what will happen from here. Dr Strumas examined Dru and was shocked by how strong this little boy was. He has to get a tongue depressor and use 2 hands and a lot of force to get his mouth open. He then cried really hard...poor boy has had some many people in his little mouth lately.

They are disappointed that this has happened but it happens! The thought is that the stitches attached itself to a blood cloth, so when it disappeared, the stitches had nothing to hold on too. They cannot do anything right now. Dr. Strumas said it would be like putting a hot knife in butter. So, we need to wait for this to heal and then try again. The earliest it will be is in June.  We are permitted to get him on a regular diet but trying to avoid hard things.

I am so worried. What if it continues to separate? I am so sad that he will need another surgery soon. Wow! I thought this was going to be a breeze because we have been down this road before and, his cleft palate seemed not as wide as Miss Diva's.

Oh well, I am going to try and enjoy March Break with my princess at home.

just hanging out in the laundry basket

 mama giving him his first tattoo, he thought it was great! He was getting a sticker on his arm like mei mei.

                                                                 playing together!

Back To Mac

Saturday evening I knew something wasn't right with weeman. He wasn't able to go longer then 3 hours without pain meds and he was doing 4-6 while still in the hospital. During dinner that night, I noticed there was little blood coming out his nose. Jason had said it was doing that at the hospital and not to worry. I worry about my kids! All day sunday, we saw no blood, he was still needing the pain meds but playing, eating, drinking and being a happy boy. Sunday had gotten a lot worse. We couldn't get him to drink or eat anything. Finally I pureed watermelon and got some liquids into him, so I thought. He spit it out and there was a lot of blood. I quickly got him out of the chair and tilted his head back, and sure enough, there is a huge hole in his palate!

I didn't know what to do! I picked up the phone and called McMaster and got to chat with the surgeon on call. She asked us to try and keep him comfortable at home with pain meds until Monday, we chat with the plastic surgeon,

but if not bring him back and we will get him on pain meds there. I have been able to keep him pain free for right now.

Dr Strumas called Monday early afternoon and we chatted. He is a little concerned but not worried because it's weeman's soft palate and not the hard palate. He is going to see him tomorrow at 1:30 and we will decide what happens from here. I am hoping it's next week that this gets repaired. My nerves are just about to be frazzled more than I can handle.

I hope this works and he doesn't need more surgery for a few years.

I will post when I know more.

Dru's palate repair

Wednesday, March 4th , Weeman had his palate repaired. I was so nervous because he would start screaming everytime he saw someone come near him in scrubs. I walked him into the OR, cried until they told me he was out and they walked out. My heart shattered! This was not going to help with our attachment!

The surgery was 2.5 hours long and I was driving myself crazy staring at the clock in the family waiting home. Finally, I asked Jason to go with me to the gift shop to buy Weeman a stuffy. I had to get out of that room.

Finally Dr, Stramus came to chat with. Miss Diva was so funny! She walked right up to him and said "give me back my brother." Everything went well. I was going to be permitted to go in recovery within the next 10 mins. I couldn't wait to hold him in my arms. I walked through the recovery room doors and there he was, all cuddled in the corner of this very long bed. I crawled into bed with him and held him until it hurt. My heart was so hurting and kind of felt guilty for "hurting" my son. The nurse caring for him told me his oxygen was low so they were going to put him on oxygen and his rate was really high. I was so worried about him. The nurse increased his fluids and his heart started to come down. He continued to have oxygen for the next 24 hours.

Once we got upstairs, he started to wake more and wanted snuggles, food and things to drink. He was eating ice cream, apple sauce, pudding and lots of water. I was so happy because miss diva was 2 days before she would let us anywhere near her mouth.This was awesome!

Weeman came home on Friday morning with ear drops and pain meds and doing well.  He is eating okay but could be a little better. He is starting to act like his old self and I worrying less. Glad to have my little man home.

Thank you Cleft Team @ McMaster hospital you are amazing!

              Weeman is home with his no- no's and he actually doesn't mind them to much

2 months home

It's hard to believe we have been home only 2 months. It feels like he has been with us forever. He is doing really well. We finally found a sleep routine that is working and he sleeps until 6-6:30 am. Then I hear him callin' "ma ma." Such a sweet sound to wake too.

His eating is mind blowing...the amount of food he is eating is like a grown man. I think this a form of hording....we feed him on demand until he realizes, there will be plenty. He loves his almond milk as well.

We are all in love with this little boy. He still screams a little when he doesn't get his own way, but he just lost all control of his life, so I am trying to be very patient.....sometimes, though, it's not working.

No matter the hill, we will climb it together...

The kids love to play with their baba. Miss Diva is loving the fact that baba is home all day everyday, for right now. It will be a very sad day when he has to return to work.

Playing on the floor, climbing and tickling is a everyday occurance in our home. I love the little snuggles and the sloppy, drooly kisses. Love changes everything.

Family day was just that! We hung out at home, played with some new toys, watched The Magic School Bus and apparently me and miss Diva took a little snooze. Life cannot get better then that......love this girl to pieces,

The kids love hanging out and playing together. I hope they will always have time for each other. They are doing ring-around- the rosie here. Weeman loves his Mei Mei and we are happy they are creating memories and lovin' life with me and Jason.

Miss Diva recovering from p-flap surgery-

 Miss diva recovering from her p-flap surgery. This little girl is the bravest little girl I have ever known. She walked into the OR with no tears and was brave and stronger than me. I cried when I saw her with blood coming out her mouth and nose. Her face was swollen and marks on her cheeks from her mouth being forced open.One brave little peanut!

Just chillin with her Zippy and I was so happy that I brought soup and pudding with me because no else could get her to drink. I also brought chocolate almond milk and mama got the fluids in her.

feeling a little pain here, she hated asking for medication. she did not like the taste in her mouth. She cried once because she waited to long to tell us it was hurting and the pain got unbearable. I  cannot even imagine the pain.

This was today before she was discharged to come home. We played a my little pony matching game and did some colouring together. She was feeling really good here. We went for lots of walks and even went into the Ronald McDonald room where she made crafts, I had a bowl of soup  and made myself a cup of tea. This hospital is amazing!

At the Ronald McDonald room, she was given a choice of any toy in the baskets. She chose the frozen box of toys. She is playing here with my uncle peter. She calls him poppy peter. Shortly after we were told she could go home.

We are very thankful for skillful doctors and the cleft lip and palate team at McMaster.

update on us!

so, we have had health concerns with weeman since coming home.
This kid eats like a grown man. His BM's were soft or very loose and I was afraid of a parasite in his tummy. I made a doctors appointment and Jason took him in. Doctor Winter doesn't seem to be that worried and said that kids with parasites don't usually gain weight. Weeman has gained 2.2 lbs in less than a month....I am going to try and not worry.

February 4th , he goes to McMaster to meet with the rest of the cleft team..audiologist , PEDs, and speech pathologist. Jason is taking him. I am sure shortly after, we will be assigned a surgery date.

Also, February 5th, Miss Diva will have her surgery. Jason is also taking her, along with Nanny Evelyn. We've decided to not drag weeman along to the hospital for the day. I will stay home with him and go down later that day. I am already an emotional basket case knowing I will not be there with her in OR. My heart is breaking but this is what's best for our family right now.

I also got some news about the thyroid, I've had a lump there for a few years now. It's not cancer, and that I thank god for everyday. It is however making me have hyper thyroid. I will need to do a procedure that will not permit me being around the kids for 48 hours. Cannot use the same bathroom, cannot wash our clothes together for 48 hours, not permitted to sleep with hubby, not use of the same cutlery and a few other things. I am not looking forward to this at all.

Otherwise, we are doing great! Weeman is settling in nicely. Going to bed without formula, going to bed some nights without help, starting to play independently. God is good!He is faithful to those who trust him and obey. I am so thankful for guidance and love. We are thrilled to have our son home!

A month....January 8

 
It is kind of hard to believe that Weeman has been with us just over a month. January 8 was a month. He did so well with our family in China. He was eating well, sleeping well, playing well and having a smooth transition into our family. Now that we are home and settling in, he seems to be more restless. He is having night terrors between 3 and 6 times a night. Waking, screaming for mama but not wanting either myself or Jason to hold, touch or help him in any way. This is hard. This is so emotionally hard. My heart is so broken, knowing he needs to work through this on his own.

He is eating great, playing great and will go with either one of us when wake and going about his day. He is actually pretty funny and loves to play with Miss Diva. His laugh is so funny and I love it.

 Playing a fishing game with Miss Diva Christmas morning. They loved this game and I loved seeing them play together and building a bond. makes this mamas heart so happy.

 When weeman is screaming and we cannot get him to settle, the only thing we know to help him, is water. Water seems to calm him and he loves to play in the tub. He splashes and makes a huge mess but it helps him relax, so this mama is willing to put him in the tub, anytime of the day.

 They were playing together and they got in the laundry basket together. Miss Diva thought it was so much fun pushing him around in the basket.

When we got home, we had very little clothes that actually fit him. He is 21 months, fitting in 12 month clothing. I had to go shopping and buy a few outfits because everything we have is to big and way to long. He has very short legs and a big belly. So darn cute.

Dru was suppose to go to McMaster on Friday but we had to cancel because he was not  feeling well, running a fever. Now he goes down to see the Plastic surgeon on January 23. February 4 to see the rest of the cleft team. Tomorrow, January 12, is to see our family doctor, to talk about immunizations and all that fun stuff. We have a busy few weeks coming for sure.

Madisyn is doing okay. Going back to school was a little hard. She has been with us for four weeks straight. 2 weeks in China and then out for the Christmas holidays. She didnt want to leave him. The first thing she does when she gets home, is to find her brother and give him a kiss. How cute is that!I am glad she is getting back into routine and now we have to try and figure out a time for swimming lessons.

Overall, we are doing okay! Things could be a lot worse but we are trying some new things to help him. Massages, chiropractor and lavender night balms to help him relax. We will get through this!