Christmas Blessings

We have just enjoyed our third Christmas with our beautiful daughter. She is now two years old! Something that we thought we'd never see! We have so much to be thankful for, and to have spent another wonderful Christmas with her....well we hope we can enjoy a few more just like this one! The kids all had a wonderful Christmas thanks to all the special things that were done for us this Holiday Season!! We very much appreciate all the help we had to make this such a wonderful Christmas!

We had Secret Santa drop off two large gift bags full of toys for the kids. This definitely rounded out their Christmas "loot". I never feel that our children are lacking in material things, but having lots to play with when you are housebound sure does help. It keeps MaMa from pulling her hair out when they have lots of variety!

Kaitlyn had a box of goodies arrive from Kyle and Friends (http://www.kyleandfriends.org/). She got a new Microlight Switch and computer interface, a new bi-pap (ventilator) mask, and a bunch of toys! She has been REALLY enjoying the computer interface and microlight switch. Now she can play games on the computer! This is going to open up her world and help her have more independence and make some choices for herself for a change! People sometimes get confused that because our SMA children can't get up and walk and do the "Normal" sorts of things that children do that they must therefore not be right or somehow mentally impaired!! The exact opposite is true! Our children are extremely bright and often are labelled with above average intelligence! I know our little girl, even though non-verbal for the most part, has absolutely no difficulty getting her point across EXACTLY what she wants, how she wants it and when she wants it!!!!! And get it right please!!

Then when we thought our Christmas was over and good times had by all, we received a Christmas card yesterday from the South Range Christian Church with a gift for Kaitlyn!! It's hard to believe how one baby girl can touch the lives of so many perfect strangers. We have only just found out that Kaitlyn has been on their prayer list for awhile now, and we had no idea so many wonderful people were rooting for our special little girl. She has been beating the odds, living past her life expectancy, thriving, and living and loving life. If these people could meet our little one, they would see a baby full of life and hope, and teaching all those around her how to love and how to have hope. We strive every day not to extend the life of our daughter and selfishly keep her here with us (although we want this as well) but rather we work so hard to improve the QUALITY of Kaitlyn's life. I don't think that people realize that every kindness, big or small, has an impact on the quality of life we can provide for our daughter and that this is what we are so thankful for every day. It's what keeps us going. So even though it is not enough, we say Thank You to the South Range Christian Church.

I finally got a new camera for Christmas. My husband kept saying there was nothing wrong with the old one, and then it finally went completely caput! It served us well, we got it when we were married five years ago and took over three thousand photos. My new camera is very nice so the pictures and video will continue...yeah!

ER Visit

We had to take our oldest boy Owen in to the ER last night. He's had a cold and been running a fever for three days now, today will be the fourth, but has otherwise been fine. We thought that he just had a cold, although the fever not going away after the first day did concern me a bit. Well last night we put him to bed but he just couldn't settle. He got up around 10:00pm and was pretty upset. He had more fever, even though he had Tylenol just before bed, his left eye was a little swollen and red, and he said his ear felt funny. Tim and I decided to take him in to ER and find out what was wrong, we always get concerned when the kids have complaints outside of the ordinary cold. They got back around midnight. Owen came in toting a stuffed "Shining Star" monkey, and a purple mouth! Daddy came in with a prescription for antibiotics for Owen and Kaitlyn! Owen has an ear infection, pink eye, and a cold! Poor little guy. So far he is the only one sick. We filled a prescription for Kaitlyn, just in case she shows any signs of infection over the next couple of days. When Kaitlyn gets an ear infection it causes increased secretions, pain, and if she aspirates secretions there is always the risk that she could have a pseudomonas flare-up or other bacterial infection. If we don't treat her soon enough she could get pretty sick really fast!

All is well today. Owen is feeling better this morning, these things are always worse at night! Hopefully he'll have a better night tonight. He's pretty excited about Santa coming tomorrow, but concerned about how Santa will get into our apartment because we don't have a chimney! Owen can't wrap his head around the whole "He's Magic" angle! Kaitlyn is happy watching Dora today and when you ask her who's coming tonight she says "HO HO HO"! I don't know how she knows, she hasn't been coached, she just doesn't miss much. Alexander and Kaitlyn are both fine, so far no cold symptoms (or any other symptoms either!).


Kaitlyn enjoying her new Microlight Switch! She just loves it! It's hard to see in the picture but she was playing with her glow worm. It lights up and plays music for her!



Owen acting silly with the Christmas Stockings. He's such a clown. He put them on all by himself. The picture is blurry because he wouldn't hold still, so I had to snap it fast!



Look at all the clutter in my house!! At least the floors are shiny underneath all the toys scattered everywhere!!!

Christmas Party

Owen had his school Christmas Party this past Friday. The families were all invited to attend. Tim and I decided right away(of course) not to take Kaitlyn. We are on lock down this time of year. We avoid all crowded places, especially young children, until spring is here. This may sound harsh, but when you have a child with SMA you have to avoid as many bugs as you can or spend a lot of time in the hospital.

Tim took Owen and Alexander to the party. The boys had a blast! They made Christmas reindeer hats and ate ice cream (with sprinkles!) and crackers with cheese. Tim said Alexander spent the morning in the bathroom washing his hands and tasting crackers and putting them back on the plate!! Yup that's my boy! Then Tim's talking to one of the other parents and he says that Jake's brother was home sick all week and was just getting better!!!!!!!! Jake goes to school with Owen, and Jake's brother was at the party! I just don't understand how to make these people realize what this means for us. It sure gives a whole new meaning to homeschooling!

Today Owen was acting funny. Clingy, whiny, and obnoxious! I asked Tim to check his temp. 38.3 (101). He was warm all day and went to bed with a fever. He says nothing hurts, but he's four and was whiny about something, so either he just feels like crap all over, or he can't understand how to explain what he is feeling. Tomorrow is a new day, and we shall see how he is when he wakes up! I really hope it's nothing much, we don't need illness heading into Christmas day!!

Special People

There are some truly special people in this world! We have had two very kind acts done for us this week and I'd like to tell everyone about it.

The first act of kindness came from a lady who only knows us via the internet and the SMA community. Her name is Jana Gundy. Jana has a boy with SMA(four years old!) who is also Type 1. She has a non-profit Organization called Kyle and Friends which is founded to support families with SMA children. She asked me awhile back if I would mind if she sent Kaitlyn a few things funded by Kyle and Friends. Well the package arrived this week and contained a micro switch, a switch interface for the computer, a ventilator mask, and three switch adapted toys. To us this was a huge help. Kaitlyn now has a switch that is appropriate for her condition and can now work all of her toys! I thought that she was just bored with them...but it turns out that she just couldn't operate the old switch we had!! Now if I can just figure out the switch interface for the computer then Kaitlyn can start playing computer games. This is really going to open up her world a bit! Thank You Jana and Kyle and Friends!

The second act of kindness was from an anonymous person. A "Secret Santa" if you will. I discovered slid under our door yesterday an envelope. On it was written "Kim Hatchard & Family....Merry Christmas!". There was a post-it note on top which read "open the door". (We live in an apartment building). I opened the door and in fell two large gift bags full of toys. Of course the bag with the boy's stuff fell through and made a bunch of noise (talking toys). Owen says what's that and immediately grabs the toy making the noise and another next to it and hands the second toy to his little brother. Off they went to play with their new toys(one each). I gathered the rest of the stuff and put it out of sight until I could figure out what it was!

I looked at the envelope again and couldn't figure out the writing. I opened it and the card inside reads:

"Kim, I don't know you very well, but enough that I know what an incredible mother you are, and so smart and selfless. I hope you know that you are an inspiration to so many young mothers out there with sick kids or with healthy kids. I hope you have a wonderful Christmas with your beautiful family!"

"I know it is very difficult for you to get out of the house, so please accept these gifts for your children and give them from "Santa". I hope this makes life just a little easier."

Signed: "LV: Secret Santa"

I haven't a clue who the Secret Santa could be. It was a very generous thing for someone to have done! There are several toys in each bag, one for the boys and a big one for Kaitlyn! Kaitlyn's bag is filled to the top with DORA and nothing else! The boys got Diego, Disney, star wars, cars character to mention a few!! Unbelievable! Somebody put a lot of thought and time (not to mention money!) into these gifts. Such a selfless act deserves a thank you, but I haven`t a clue who to thank. Hopefully something very wonderful will happen to this person this holiday season! Thank You Secret Santa!

Haemotology

Kaitlyn's haematology appointment went really well today! It would seem that we got some miss information, or misunderstood(although both Tim and I got the same message), the last time we had ultrasounds done of Kaitlyn's clots. The haematologist said that her clots appear to have resolved! We can stop the Enoxaparin injections! One more bad thing she doesn't have to suffer through everyday.

The haematologist says that he believes that Kaitlyn may be genetically prone to clotting as blood clots are diagnosed in both my family and Tim's. He said that he felt this before he knew the family history! He said that typically a child, even one prone to clotting, wouldn't necessarily be treated continuously for clots. He is inclined not to treat her as sometimes more issues are had with blood being to thin than that she would just randomly clot. Typically a clot occurs because of something foreign being introduced to a vein (central line) or a period of being bedridden (not moving about at all) or surgery, especially orthopedic surgery. The genetic testing for clotting factors involves some extensive bloodwork, and being that Kaitlyn is not an easy poke and has been through so much we have opted not to put her through this if it won't change how we are to treat her.

We have been told warning signs and what to be aware of in case she forms future clots. Kaitlyn will also have to be treated with a course of enoxaparin every time she has any procedure done that may predispose her to clots!

Kaitlyn still has some thicker secretions from time to time. She has gagged a few times over the last three days, and then I suction tons of stuff out her nose. Mostly after physio in postural drainage or a saline neb. We have not upped her treatments as she is moving the thick stuff out, and her lungs are crystal clear. Her sats have not been affected so far, except momentarily. Hopefully she will get over whatever this is pretty fast!

More appointments!

Kaitlyn is doing about the same. She still has cold symptoms. Tim thinks that Kaitlyn's symptoms are environmental as the temperature has been up and down the last few days. She has an increase in secretions and lots of junk coming from the nose. The saline nebs in the morning are really helping to get out this thicker junk. So far she hasn't had a fever; borderline, but not a real fever.

Tomorrow we have another appointment in diagnostic imaging (ultrasound) to have Kaitlyn's legs scanned. Kaitlyn has blood clots in both legs from past central lines in the femoral veins. Her clots are both arterial and veinous. She has been on Enoxaparin injections twice a day since early August. We would really like to be able to stop these injections as they are painful. We had scans done a month ago and the clots were still there and had even gotten worse! We upped her dose of Enoxaparin last month and tomorrow we will see if that has made any noticeable difference.

We also have an appointment with Kaitlyn's haematologist tomorrow. We have never had an outpatient appointment before and Tim has never met him. It will be interesting to see what he has to say. I would like to have an educated discussion with him tomorrow, but unfortunately Kaitlyn is the only SMA sufferer I know of to have clots. There also isn't a lot of online info. on clots in pediatrics, and what I have found I have read. Not much help there!

In my last post I mentioned RSV and how horrible this disease is for SMA children. Well a little girl with SMA Type 1 in Victoria, BC is currently in hospital with RSV! Our thoughts and well wishes are with this family. We are hoping she can avoid intubation and be back home with her family for the holidays!

Kaitlyn enjoying french fries! Just don't take it away!!! Major MELTDOWN!

Kaitlyn Talking

Sling Play

Nursing and Appointments

I know I haven't written in a few days, but I haven't had time. We've had three new nurses sent in so far, and each one on a different day. Our regular nurse only came on Tuesday and Thursday afternoons for a couple of hours each, and the afternoon visits are not nearly so rigorous as the morning schedule. So, I have had to train the "old" nurse on morning care while she is trying to train the new nurses what she does know how to do. It's been a bit confusing, a bit hectic and more than a little annoying. I wish that they had just sent the regular nurse in until she had the morning routine down, and then introduced new faces one at a time. The VON nurse management think that the nurses can learn how to care for Kaitlyn in one visit. They just have no idea what is involved with taking care of her! The only ones that would understand how involved the care of an SMA Type 1 child is, are other parents/primary caregivers of Type 1 children.

We had our first RSV shots on Tuesday. (I say shots because they calculate the dosage based on weight divide that by two and give her a needle in each leg). Kaitlyn will go once a month now for RSV shots until April. RSV or Respiratory Syncytial Virus causes respiratory tract infections in people of all ages. Natural infection with RSV does not produce protective immunity, and therefore people can be infected multiple times. For most people RSV produces mild symptoms often indistinguishable from the common cold. But for our weak SMA 1 children RSV causes bronchiolitis and pneumonia, leading to severe respiratory distress requiring hospitalisation, usually intubation and even death.

My heart goes out to the families whose miracle children have been denied RSV injections for this season. Their insurance companies say that their children are too old to benefit from the vaccine! Our clinic has dealt with children up to the age of five(a trached child). I am hoping this means Kaitlyn has a few more years of coverage before she is also denied! It's a slap in the face to work so hard to keep your child healthy and happy every day, just to be denied access to something that could help save their lives!

We also saw PT for ankle foot orthosis and knee bracing. PT called back later that day and said that the rehab center was looking at the casting after we left and have decided that any bracing they could make would not help improve Kaitlyn's contractures. Her ankles are quite contracted and her feet are beginning to turn up. They have suggested that we try either serial casting, which they don't seem to have a lot of confidence in, or tendon release surgery. My problem with the surgery is that it seems like there would be some lasting weakness and perhaps more long term pain? There isn't a lot of information on either of these procedures on the internet(at least not that I can find). If anyone has any info. on either of these procedures please feel free to e-mail me, as we would love to hear your experiences.

We are home battling another cold this week. Seems like everyone is ill right now. This has been an awful season for colds. It doesn't seem to matter what we do for germ control...the colds keep making their way in! Keep fighting the germies we want everyone home for the Holidays!!

Kaitlyn's Hair after a Bath! Curly, Curly. It Dries Straight as a Pin!

Happy Girl on Bi-pap Playing with "Bun, Bun". (Aunty Cindi gave her this Bunny when she was only six months old. She won't sleep without it!!)

More Nursing

Kaitlyn has FINALLY been given more nursing hours. Home Care has finally arranged with VON services for more nursing hours for Kaitlyn. We were getting three hours twice a week for respite visits from a VON nurse. We were told that Kaitlyn requires visits from a Registered Nurse, my understanding is that nobody else has the necessary qualifications or training to deal with her level of care. Even the VON nurses here have never dealt with a child using a cough-assist machine and bi-pap. I haven't met a single VON nurse who has even heard of the cough-assist machine before arriving in our home.

Home Care decided to request morning VON respiratory services. We now have a nurse in our home every morning Monday through Friday from 8:00am until 10:00am performing all her respiratory treatments. So far it has been working out OK. They were supposed to send Kaitlyn's regular nurse in this week, and start introducing more nurses for training next week. But the last two mornings we have had two nurses, Kaitlyn's regular nurse and a newbie. It has been tough on all involved! Poor Kaitlyn is just trying to get used to having somebody else get her out of bed in the morning. Now, she has to tolerate having a new nurse practice using the cough-assist on her and learn how to suction, carry and position her. As she is still really a baby she gets a little nervous when they don't know what they are doing!!

The first new nurse was a "swirler". This term is coined by another SMA Mom. (Thanks Jennifer). The nurse is used to dealing with a trach and when you suction a trach you swirl the catheter around in a big circle the diameter of the trach tube removing any secretions as you pull the catheter out. Well....as you can imagine, poor Kaitlyn opens her mouth to get suctioned and has a catheter placed to the back of her tongue and pulled out in big circular swirls. SHE WAS NOT HAPPY. She cried through the rest of the cough-assist treatments that were done that morning!!!

The new nurse that arrived this morning was much better! I couldn't have picked any faults with her visit. The biggest issue is that one visit is not enough to learn Kaitlyn's routine. Let alone learn all of the minute little details that are part of taking care of Kaitlyn. Our regular nurse is off on Mondays so I am interested in who they're going to send to replace her this coming week. It should be an interesting morning.

I'm hoping that this all works out as it gives me more time in the mornings, one of the busiest times of my day. It also means that my boys will now be supervised in the mornings. No more running wild for two hours while I deal with Kaitlyn.

Saline nebs are still working out really well. I cannot believe the difference in her. I haven't added the afternoon neb yet. I have been thinking about it, but she has been so good thorugh the afternoons the past few days that I don't really want to change anything yet.

Saline Nebs

Well we spoke to our pulmonologist during our clinic day about trying saline nebs. We have been having issues with Kaitlyn's secretions since the colder weather started in September. We are noticing her secretions are thicker and all in her throat. Since we have had three colds go through the house beginning in September we sort of thought that the secretions were residual from the colds. But she just never quite gets better. This led us to the conclusion that the secretions are probably more environmental. A few weeks back I turned up Kaitlyn's humidifier on her bi-pap and she seemed to get a little bit better for a while. So then, networking with a few experts ;O) , we decided to ask about saline nebs. Our pulmonologist said that sometimes they have very good success with nebs and sometimes all it does is causes even more secretions. Well we decided to give it a try. I figured that it was worth a shot. I was already having to sit close by with suction in hand!

So far it seems to be working! For the last three mornings we have run saline nebs in line with her bi-pap. It seems like I'm getting a little more out of her with her morning respiratory treatment. This is really good as her secretions are much thinner throughout the morning and early afternoon and I am suctioning MUCH less. She has been going full half hours without suctioning! She hasn't done this since summer. Her secretions begin to thicken when she gets up from her afternoon nap, so I'm even considering doing another neb at the end of her nap. I'll give her a couple more days with one neb in the morning and then I'll try the afternoon neb and see how she does. Baby steps!

Tim's hernia surgery went well. He is pretty sore, and still not up and down very much, but doing a little better each day. Tim's Dad "Grampy" has been staying with us to help with the boys. I couldn't handle Kaitlyn and the boys in the mornings and the evenings. Throughout the day I can manage all three, but Kaitlyn's morning treatment takes a long time and she takes forever at night with her bath and resulting drool! The boys need supervision during these times. Thank goodness for Grampy!!

A picture of Kaitlyn sleeping while getting her saline neb. She sleeps through me stopping bi-pap, breaking the line, adding the neb. to the line, restarting bi-pap and turning on the nebulizer machine. She doesn't wake up until I have to suction her.

Owen writing letters to Santa. He had me write down what he and Kaitlyn wanted for Christmas and when I asked him what Alexander wanted he took the notebook back, ripped the page out and then told me I could write Alexanders' on another page! Funny boy!

I was drying the dishes a few mornings ago and paused for something.....then I felt a tug on my towel. The camera was on the counter in front of me!! What an opportunity! My boy loves his damp dish towels....what can I say?? He's just an odd little guy ;O)