Family Visit

Well spring has sprung and is finally here. May not be completely warm yet but the rain has hit, the crocuses and daffodils are in bloom and the evidence of a long "dog winter" is in the back yard for dad to clean up. Ha ha. Addison and I have had a chance to get out and have a few walks in some nice weather but are itching for more and to get some spring yard cleanup done. I know Addy just can't wait to get that garden rake or shovel in her hand???? Maybe that is me!!

Well we had a great March Break visit last week from Granny, Grandpa and Talyor. So good for them all to see Addison at home. This was Addison's first big meeting with her sister Taylor and the first time that Granny and Grandpa got to hold their little grand daughter. So exciting and touching to see them all together and see the love that they all had for little Addy and Addy for them. Addy was very intrigued by Grandpa's beard and could not resist to reach out and touch it as she gave him a big gummy smile. She comfortably curled up on Grandpa's chest and fell fast asleep after grandpa fed her her bottle. Taylor was soo good with her little sis, and we can't wait for them to spend some more quality time together in the near future. We got out to Twin Pines Apple Orchard and introduced Granny and Grandpa to their wonderful Cider and Iced Wine. I think we may have intrigued Grandpa into taking on a new brewing endeavour from his home orchard?? We will wait and see. What a great visit, thanks for driving down guys and we can't wait to see everyone in a few weeks for Easter!!

Unfortunately after our visit, the three of us came down with a case of stuffy nose and sore throat (not from our visitors, just a bug in the air) . Addison did not get to bad, as she receives my antibodies through my breast milk and daddy wore a mask and took necessary precautions to not pass on anymore sickness. She attended Dr. Stare's this week and got her third dose of Synergis shot for RSV and will receive the last one next month. This is until cold and flu season hits again the end of next fall and we start the shots all over again. Horrible that she has to get stuck with all these needles but important for her little body and lungs to get all the chance they can to stay healthy. Much appreciated that these injections are ordered by the hospital and doctor as part of Addy's care as these shots are not covered by most Insurance companies and cost the sum of $2500.00/injection!!!! Well we hope they are covered anyway, as we have not received a bill yet!! Cross our fingers.

We stopped in at the Public Health nurses today for a weigh in and unfortunately Addy did not have a great gain this week because of her sickness. We hope she recovers by the end of the week and can increase her calorie intake to make up for a few ounces by next week. We were advised that health officials like to see a gain of approximately 4 to 8 ozs over a week and poor little Addy only had 3 oz this week and that was a weigh in with a wet diaper. Yikes not good. She seems to have turned a corner a bit this afternoon and is feeding a bit better and seems to be a little more alert. She actually scared herself trying to talk to me during diaper change. She let out a little screech, which I dont' think she was expecting to hear herself do and kind of gave me a look like "Whaaat was that"???? Moments where I wish I had a running video on to just capture, because you just cannot get a camera fast enough.

We continue to have assessments with the Pathways Occupational and Physiotherapists at home, and the ladies were impressed with some of Addison's progress in her movements and development. Some of our good work has payed off with our exercising Addy's left side, as her range of motion on that side has increased. Even though she still tends to favour her right side more, she is able to turn her neck to the left and go closer to the ground than she had weeks prior. The team gave us some more new exercises for Addison's tummy time and to assist us in strengthing Addy's ability to hold up her head and neck. Addison is now starting to reach out and grab at objects a little so they advised us to encourage her with hanging objects in front of her during awake time to test her. We have also signed ourselves up for a baby music and signing class at our local community center and look forward to signing up for baby massage and food prep in the coming months. Lots of stuff to keep us busy, waiting for that nice weather to come!! Happy Spring everyone!!!

Spring is in the Air

Well with the wonderful weather we have been having the last few days, we definitely feel like spring is in the air around the house. We just hope that it sticks around and old man winter does not reappear. Addison's new favorite past time is to sit in her Rainforest swing in front of the big living room window with the sun shining in, while she watches the animals go round and round.

We have had a busy few weeks around the house, with Addison's visits from the Pathways Teams and mom just getting out and getting some things done. Addison continues to be improving daily and growing right before our eyes. Last Thursday we ventured out to the Best Start/Early Years center in town and met with the Public Health Nurse. This is a great little center with programs for infants, toddlers and children; along with several resources from books and DVDS, as well as a Public Health Nurse that visits every Thursday. Addison got a weigh in and came in at 10lbs and 3 oz, way to go. I have been concerned about her weight gain lately, as I have lost the comfort of having a scale at home, so it is nice with the Center in town, we can go and get her weighed weekly now. If the problem arises that she is not gaining enough weight, then we will catch it early, instead of waiting for our monthly doctor visit. Addison continues to eat well, the concern is just that she works so hard at breastfeeding and bottle, that she may be burning more calories than she is taking in. The feeding team from Pathways came back for a secondary assessment but we cannot seem to come up with a solution that will stop Addison from working so hard at the bottle and breast. Thankfully our choking episodes have subsided a great deal, we just have to be patient and let her grow and get stronger as she does. We also ran out of our normal breastmilk Supplement formula from the hospital and were given a sample from Dr. Stare to try. Unfortunately Addison's body reacted to it and she broke out on her face with baby acne and a rash around her eyes and a bad case of gas pains. I stopped supplementing the formula (until we could obtain some of the original kind we had been using) and I could see the rash and acne settle down. Her gas pains have subsided a little but she seems to be in some pain at night, which keeps her up and very tired. Although it is a blessing she is sleeping well through the night when she settles, it is really hard to wake her in the morning and she almost misses two feeds. So a little trial and error, we are back on our regular supplemental formula and hopefully we will be on track again soon. You just feel so bad for the little girl when she cries and just cannot get the pain to go away for her. Cross our fingers that we can solve the problem and it is not something worse that will cause an unexpected visit to the doctors.

We have been working daily on Addison's use of her neck, shoulder, arm and chest muscles on her left side, and though she seems to be a bit better at turning without alot of stiffness, she still reverts back to her right side. The Occupational and Physiotherapist return at the end of the month and hopefully they will see some improvement and offer some more exercise suggestions. I have taken the intiative and ordered a book on my own called "Itsy Bitsy Yoga" that provides exercises to assists infants in their body and muscle development, so hopefully this will help as well. Addison has become quite strong with her little legs and has begun to stand up quite often while we are holding her and push against us to pull herself up straight. It is wonderful to see. Dad believes she will skip the crawling stage and go right to walking!!! We shall see.

She continues to be a happy, content little baby (minus her gassy episodes) and travels out and about very well. Addy enjoys our new Ford Flex, as there is tons of room for her in the back and a cool sunroof that she can look out of while driving. She has been to visit Mim and Aunt Danielle, and has gone out shopping and to her first birthday party. We are taking baby steps and trying to maintain a germ free environment as best as we can, while trying to get her out and socialized to the outside world. Here is a pic of her meeting her cousin Zak for the first time!! He was so gentle and excited to see her, he jumped right on the couch to hold her. Logan though excited to see her thought that maybe another time would be better to hold her. Ha Ha. Over the next few weeks Granny, Grandpa, Taylor and some Addison's "Aunties" from Ottawa will be visiting and then we hope to go down to Granny and Grandpa's for Easter so Addy can meet Aunt Steph, Uncle Rick, cousin Sydney and the rest of the family.

It is hard to believe that almost two months have gone by with Addy at home!! We cannot believe that she is already 5 months!!! About a week ago, we had a friend Sonja come and take some great pics of Addy ( who decided that she did not want to sleep that day, sorry Sonja) We cannot wait to see the outcome of the shots, so excited. It is so amazing to see her grow up before our very eyes, we never thought back in the hospital that we would ever get to wonderful days like this. We treasure each moment with our little miracle and are thankful to the powers that be that she is home with us and making us smile everyday. God Bless the Child!!

Little smiles and Coos!!!

Well the other day we had the joy of our lives when Addison gave us our first big gummy smile, and we know it was not gas!!! So incredible. She was so darn cute and we were so taken with her that we forgot to snap a picture of course. Well now she has taken this on and finds it quite amusing to smile, but not at the oportune moment when mom has a camera in her hand, little monkey. Addison has also discovered her little vocal chords and has shocked us with her first couple of big cries to let us know that she was hungry. She is very much like her dad, she lets you know when it is time to eat!!!! Wonderful to hear though, as we have always been worried and had it in the back our mind that her vocal chords may have been damaged from the PDA heart surgery, as they had to operate so close to the throat. She has even managed to find her happy voice and lets out little coos and baby talk now and again, when she has her awake and exercise time with mom and dad. Addison continues to enjoy exercising with mom and dad, which assists her in her muscle development and movement, and she so enjoys her bath time. It is adorable to see her wiggle around and almost just lay back and relax like she is at the spa.

Over the last few weeks we have had the opportunity to have visits from members of Pathways Health Center for Children, to assist us and do assessments on Addison's feeding issues as well as growth and behavioural development. We have had members from the feeding and speech team, as well as an occupational and physiotherapist. The ladies have been wonderful and very helpful in their assessments and guidelines given to us for exercises and what to do to try to curb Addison's choking issue while taking a bottle. The feeding team girls advised that Addison has some issues feeding on a bottle and nipple because she has a very short tongue and high palette. This does not allow her to get the optimal seal and suck to draw the milk out because she has to drop her bottom jaw so far to draw up to get the power. Choking occurs because when she does get some milk it is believed that it comes to fast and she is not ready for it, so coughs and shuts off the valve to avoid aspirating her milk. Which is a good thing as she is stopping herself from aspirating, however she still sometimes forces herself to stop breathing as well. The team advised that the dangly thing (the name is escaping me) at the back of Addison's throat has not developed it's muscle reaction as it should to flip up and block the nasal cavity. This is as a result of Addison having tubes down her nose and throat for such an extended period of time, thus when she feeds she is sometimes getting milk up into her nasal cavity as well. Over time however, the muscles should develop which may alleviate some of the problem. The team did a thorough exam and observed Addison feeding to come to this conclusion and provided us with some alternate bottles and nipples to use for feeding that may help avoid the issue. We have tried some and the Adiri bottle system seems to work well as it is designed to be very similar to a mother's breast. The bottle takes a long time though as it is very slow paced so we may have to jump up to the next stage bottle, but we meet with the team again today so perhaps that may be suggested. Who ever knew that feeding a baby would be soooo hard!!!! It seems so natural, but I am quickly finding not so for little Addy.

Yesterday the developemental team (occupational and physiotherapist) came out to the house and did an assessment on Addy and her current developement. They did not get to complete a thorough assessment as Addy refused to wake up for a good portion of the time that they were here, so they will be returning. From what they were able to see they advised that Addison is progressing nicely and is showing some of the development that a newborn baby her age would be doing. They do belive that she does have some definite issues with her midline (bringing hands into center of body and bringing them to hand and mouth) and the use of her left neck and shoulder muscles. It is clear that Addison favours her right side and always seeem to turn and rest her head that way. When attempts were made to go to the left she definitely resisted and it was obvious that there was resistance in her muscle mass as well. Mom and dad were offered some exercises to stretch out the muscles along her neck, chest and back, as well as ideas to use during play time to get Addison to utilize her left side. The fear that if this does not get corrected Addison may tend to have a pronounced tilt in her head to one side as she grows up,which may also affect her posture, walking and possibly speech. Things that we definitely did not know and are glad that they have been pointed out.

All in all things are going very well and Addy is just a little angel. Her strength and preseverance astounds me everyday, she has just crossed so many hurdles and continues to thrive everyday. I look back often to my first posts and I cannot believe how small and fragile she was only 5 months ago!!! That is why special moments like this when I can just hold and cuddle her and feel her little chest breathing up and down against me are moments in time I will not take for granted.

We got some great news the other day, Addy's little boyfriend that she went through her journey in NICU/PICU with Deecon, is doing well (off O2 and feeding) and almost home with mommy and daddy. Way to go Deecon, we are so proud of you and cannot wait to come and visit you soon!!!.