Christmas Update

I know I have been neglecting my blog and blog friends. Things have been really busy and crazy. We had a pretty good Christmas considering all that is going on. We spent Christmas Eve's at my Aunt's house. Blyss had a ball and was showing off her speaking abilities. She was all over the place talking to everyone. Usually she is a little shy. It was probably the sugar in all of the cookies she ate. Christmas day we always go to my mom's for breakfast and spend most of the day there. This year was definitely one we wanted to share together. The children all had fun with one exception. Wysdom. He is teething and he was not happy all day or for the last couple of days, but who can blame him. He is normally so easy going that we just feel bad for him while he is in so much discomfort. Wysdom did get some great toys as did Blyss. Blyss is thrilled with all of her toys and just spending time with family. My mom was able to spend a good part of the morning and early afternoon with us. She surprised us with a Wii(great for stress relief by the way). She is always outdoing herself and thinking of others. We were thrilled and shocked of course. She enjoyed watching us play for a bit. I got lots of pictures that I will post soon. Thanks again for all of your thoughts and prayer's for our family and my mom.

Merry Christmas

Thank you everyone for the prayers that you have sent for my mom-please keep them coming. I want to wish everyone a Merry Christmas! I hope everyone has a great Christmas filled with lots of love, family and friends. I am so blessed to have you all in my life and wish everyone the best for the holidays.

Keep us in your Prayers

I need your prayer please!! Please pray for my family and keep us in your thoughts over the holidays. I can't really elaborate right now, but I would appreciate your thoughts and strength at this time.

This prayer request is not Wysdom related just in case you are wondering. Of course you can go ahead and pray for him to, but I just wanted to let you know that he is doing fine. He actually seems to be thriving right now. He is playing a lot more and interested in new things. He seems to be trying to communicate with babbling and occasionally says mama . Like last night when he was upset.Mama only comes out when he is mad so far, but hey I will take it. He also used the sign for up with such energy and force last night when he was upset. I wish I had it on video. It was like "Pick me up now, mama". I loved it.

This week he got a visit from the feeding team and we got to see his overall progress on growth. He is currently a big boy and weighing in at 20 pounds and change. He is at the 75% for weight and 50% for height on the down syndrome charts. He is also learning to try to bottle again and is giving it a good effort.

We have a couple of more appointments before the holiday's arrive. I have done most of my shopping this week in little spurts and am almost done. Blyss is very excited and I can't wait to see Wysdom open up a gift for the first time. We are still trying to see if we can raise some money over the holidays for Reece's Rainbow(see previous post). Things are a little crazy in our lives right now but we still want to try raise some funds,so I will keep you posted on that as well:)

In Urgent need of a family and donations

Please Grab This Button!
URGENT PLEA!
Please read this and pass the information to as many people as you can. This little cutie is being transferred in a few months to an institution.


My husband and I donated money this week to Reece's Rainbow in the spirit of giving. Recee's Rainbow is an international adoption agency for children with Down syndrome. By raising money to offer adoption grants on waiting children, they in turn are able to give adoptive families the extra financial help they need to bring a child home and avoid them getting put into horrible institutions where they are basically left in their cribs for life, with little nutrition or care.

I am so happy we were able to do so. However I have been truly bothered as well. I have seen all of the children that are waiting for help and homes and it is heartbreaking.

I just happened to see another blogger post an urgent request for children that need our help asap and on her list was Ian. I have been touched by Ian# (y65w-2) . He is close to 4 years old and is African American and is in an orphanage in Russia.(Yes this is a rare case because of that) Truly, I am touched by all of the children but just happened to connect with his picture as he reminds me a little bit of what Wysdom could look like when he is that age. He could so easily fit in with our family if we were in a position to adopt. However we are not in a position to do so, however we thought that we could spread the word and try to raise funds for him.

So we contacted Reece's Rainbow this week. We had the idea in our head that we could try a little more over the months and gather some donations from family. Well when we contacted Reece's Rainbow I learned that Ian did have a family ready to take him but that fell through and now he is going to be transferred to an institution within the new year. They said it would be anything short of a miracle if funds could be raised for this little boy. So I am asking everyone who can to donate for Ian and to pass the word along. He doesn't have much time at all. We want to collect some money for him and hopefully inspire a family to adopt him. From talking to the staff and Ree's Rainbow, the only way an adoption may happen is if significant funds are raised ASAP and a family is found to secure him from being transferred. So please do what you can to support this little cutie before he is sent away to an institution for life.

His description is "Ian is a very special boy! It is rare to find a child of African descent in Russia, but here he is! Ian is HEALTHY, with no heart condition. He is active and happy and an orphanage favorite. He does have one undescended testicle on the right side".



For more information on Ian and other urgent cases please go to www.reecesrainbow.org/waitingchild2.html

Or contact Andrea at bamaroberts@comcast.net

Trip to the hospital..for my mom

On Saturday Julian and I were going to go to my work Christmas Party. This would have been our first time out since Wysdom's birth. (Together as a couple and kid's free). We were looking forward to getting out. My mom and our student respite worker were planning on babysitting.

However the unexpected happened. Unfortunately on Saturday morning my mom went to the hospital. She has been dealing with pain in her back and side for several months now. Her doctor has been testing her for a slew of things and all the test are coming back negative. That is good of course, but something somewhere is not right. She still is in a huge amount of pain. On Thursday her doctor changed her medicine and when she took the new pills it made her worse. Since her doctor was not working on the weekend she had to go into emergency. How stressful!!!! She was there for about 8 hours, mostly in the early morning. I went to see her at the hospital on Saturday and by the time I got there she had been discharged. She is home now and in lots of pain and no one knows what it is. My cousin who is a paramedic went to see her tonight as she is not feeling well. My fun loving mother is being weighed down by pain. She is spending all day in bed for the most part. She has been unable to come out and do anything related to Christmas. She is very stressed out about it and her blood pressure keeps going up.

I am hoping that I can help her out this week with something. Either making dinner or just visiting. Last week I couldn't really do to much with all of our appointments. I did drop over today and give her some books on healing and some relaxation cd's and calming herbal teas. I am hoping that she can relax a bit and try not to get to stressed out. I think I will also bring Wysdom over as he brings a big smile to her face and maybe he can distract her from the pain for a little while. Blyss just wants her Nana to do stuff so it's a little harder with her. Please keep her in your prayers over the holidays. I tell ya.... never a quiet moment around here. I think I will be doing some relaxation techniques and taking some extra supplements for stress as well. I am still determined to get into the holiday cheer. I will keep you posted.

Christmas Spirit. How do you get yours?

Well this week is over and I can finally shift gears and start to think of the holidays. Each day this week was packed with appointments so it hasn't felt like Christmas yet. So I am on a mission to get into the holiday spirit in a matter of a week or so. I am hoping to maybe do a little baking, to do something charitable and oh yes shopping. I have not bought a single thing.I do have a lovely mother who put up my Christmas tree a couple of weeks ago for me. I would love to hear what special things everyone is doing to get into the holiday spirit? Any recipes to share or Christmas cd's that you can share? I really want to do something memorable this year as last year I was in the hospital with Wysdom. Well that's not totally true. I did sneak out for a couple of hours on Christmas night. So please share!!!! I can't wait to read about your Christmas cheer.


As for the rest of the updates:
This Thursday we went for a hearing test. I think that getting things put in Wysdom's ears is his least favorite thing. In the time that I parked the car and got to the room where he was with my husband, Wysdom had a runny nose full of snot, tears streaking down his face and he was trying to catch his breath. Luckily the technician got a few readings and decided that he really doesn't like the test. So she decided to stop for now as we know he is hearing better after the tubes were put in his ears. Friday we had an appointment scheduled about an hour a way for his plastics appointment for his forehead.(For those of you new to my blog-see post on plastic surgeon for more info as to why we are going to see one. Sorry my link is not working, something about pop ups.) Anyways we decided to cancel due to the weather,lack of sleep and general tiredness this week.

Eye Clinic and G Tube Updates

Today we spent the day at the hospital. No emergency!! Just two appointments. We went to get our updates after all of Wysdom's eye tests. We still don't know if he will need surgery yet or not. That will be decided in a couple of months from what I understand. We are to patch Wysdom's left eye for one to two hours a day for the next couple of months. This is in hopes of strengthening his right eye which tends to turn inwards. Both of his eyes turn inwards but the right does it the most.

We found out that THANKFULLY the CAT SCAN was fine. The VEP that we had done a couple of weeks ago(where Wysdom got to watch TV with the electrodes on his head)was not okay and came back as abnormal(for lack of a better word).

So we will see if his eye can strengthen with the patch and some prayers and then go from there. He does have pendulum nystagmus which is an involuntary rhythmic shaking or wobbling of the eyes. There are over 40 types of nystagmus and it is associated with some vision loss. However there is little treatment for it. If he does require surgery it will for his eyes that are crossing not the nystamus. We are told that the surgery would be before he is two years old.

As for the G tube it looks great. Our surgeon also suggested some options for Wysdoms constipation. He suggested that we add in the use of Senna specifically SENAKOT or PEG. Anyone tried either of these with their little ones? I have heard of both before but would like to know if anyone has tried it.

We are off for an RSV shot in the morning and a trip to see an new PT and OT. Thursday a hearing test and Friday to Sick Kids to see the plastics department for his forehead. Wish us luck!

I GOT MY CHRISTMAS GIFT EARLY!!!

I just want to share that Wysdom gave me an early Christmas Gift yesterday!!!. He sat for the 1st time by himself for a few seconds. He did this several times in a row. I had to call my husband to come and verify that he did it. He has not been showing any signs of sitting. Let me just say that I am so excited and was so surprised that he did it.

Yes I know we are behind in the physical therapy area, but that is okay. I have been okay with the fact that he hasn't sat because I know that he has been through a lot and was sedentary for the weeks after the g tube until it healed. The only time I was really upset was a couple of weeks ago when our therapist hinted that he may not be able to sit. Since then we have made it our goal to prove the opposite. Way to go Wysdom.

Any yes I am feeling a lot better. I am not a hundred percent but a lot better and out of bed. Wysdom sitting definitely gave me the boost that I needed though. Thanks everyone for your thought and wishes.

Mommy is sick

I am feeling under the weather these days. Looks like I have been brewing a sinus infection over the last little bit. I am into natural remedies and have been taking them for the last couple of weeks. At best it has kept me going and kept things at bay I have been feeling like I was wining the battle. However add in a dose of sleepless nights and a birthday party and some entertaining and WHAM! I AM SICK. So today I bit the bullet and went to the doctors and got some medication that knocked me off my @@@. So I am off to bed and will catch up on your blogs and on my post in a few days hopefully. I need to get better for next week which is packed (and I mean packed) with appointments. Off to bed!

Birthday Party Pics!!

 

Here is a shot of Wysdom's cake and some pictures from his Birthday party. This is Part 1 of 2. This weekend we only had my side of the family over for the party. Julian's family will be coming down on Sunday for Birthday Part 2. We both have large families and we thought it might be to much to have 30 people squished into our little place. We also didn't want to overwhelm Wysdom with so many people at one time.

 

This is big sister Blyss getting ready for the party. She was very excited, but also a little jealous too. So we had to get her all dolled up for the party so she felt special too.

 

Nana and Birthday boy.

 

Grandpa and Nana came early to help out and get some hugs.

 

Wysdom really enjoying the whole Birthday thing. He was quite happy with his cake and everyone singing Happy Birthday to him. A little secret is that I practiced singing Happy Birthday with him for about a week prior to his party so he could get used to the song for his big day. It worked. He loved it.( I didn't want him to get startled and have reflux issues all over the cake:)

 

I think this was pre party. Anyways I love it because I actually caught a smile on camera. That is a hard thing to do! Love ya my chubby man.