Lorena's 1st Birthday

April 1, 2009
 
Dear Family & Friends,
 
Today is April 1st already and it is time to write an other update. It is good that I am writing this update after 3 months as it makes me see how much she has progressed again in these last 3 months.
 
Over all Lorena is doing very well and she is lots of fun. I send the last update out just after her 1st birthday. It was on her 1st birthday that she 1st pulled herself up and we found her standing in her crib. Since then she would pull her self up in her playpen and along the furniture and slowly on she started to walk around the furniture.
 
After her 1st Birthday we decided to quit trying to feed her the bottle. She hated the bottle so much that she would start to gag the moment she say it getting close to her. I think after trying for a whole year (somewhere close to 3000 times) we should be allowed to give up especially as it was going nowhere. The good thing was that we could start to introduce homogenized milk in a cup to her. At first she did not like this either but slowly on she would take a few sips a day and today she will drink about a cup of milk over the day. Even getting her to drink water was difficult but by mid Feb. she was starting to take a 1/2 bottle of water per day, it was a good start.
 
On January 20 we had an other appointment with the dietician and we decided to drop an other bottle and try to substitute this with a solid feed and extra drinks. We were very thankful that this worked good and we were down to feeding 3 bottles a day through that NG tube. that day she also got an RSV shot again and somehow I think these shots (in 2 legs at the same time) scared her so much, because she totally did not expect them, that she is scared to even be put down anywhere else to take off her clothing or change her diaper. 
 
On Jan. 22 we had an other appointment with Dr. Eccles who operated her. Lorena's scar and muscle tissue is holding good and it is still looking great. Dr. Eccles also concluded that because Lorena is improving with eating and because of the extra risks involved a G - tube will not be neccesary. You can well imagine our relief. that is one less operation for Lorena.
 
On Jan 23 she got her immunization shot, 4 needles this time. however she remembered her last hospital visit and she refused to go on the scale, we tried sitting or laying but she just cried and tried to scramble off the scale. We could not get her weight.
 
On Feb. 17 we went to the hospital again for her RSV booster shot but even though it was a month later she had not forgotten. We tried to weigh her but she screamed, turned beet red and just threw herself of the scale, it was a good thing I stayed near by to catch her. We finally had to resort to putting dad on a bigger scale and weighing dad alone 1st and then with Lorena in his arms. This is off course not a very accurate weight but it did give us an idea and we were happy to find that she had grow even with one less bottle.
 
For the next month we had no appointments for Lorena and just as we thought we would have anice breather we found our self running around with all kinds of appointments for Jeremy. Jeremy has an eye problem for which he will need eye therapy for 3 months.
 
On Feb. 22 Jeremy celebrated his 10th Birthday. We made him a firetruck/station cake and he was thrilled with all the nice gifts he received.
 
On March 17 we had our next hospital visit for yet an other RSV shot and about her continued feeding difficulties with the O.T and dietician. We decided to play it smart. We asked them to reverse those 2 appointments and to do the shots at the end so that we could actually talk to the O.T. etc without having a screaming Lorena to deal with in the mean time. Also rather then laying her down to undress her to weigh her on the scale, Lodewyk held her while I took off her clothing just around the corner from the scale so that she could not see what was coming. It worked and we managed to get her on there for that 1/2 minute needed to get her weight. Lorena had grown again and she weighed 8.18 kg so we were pleased. Still she is below the bottom of the growth curve but growing steadily. She just recently outgrew the size 2 diaper. After weighing her we calmed her down by holding her hands and letting her walk up and down the hallway, she loves walking with us. We met with the dietician and O.T. but they were not to eager to drop an other bottle but we felt that if we would drop an other bottle Lorena would eat more herself  to substitute this bottle too. We had to push and so they asked the doctors permission and the doctor agreed with us. so we have just 2 bottles a day left to feed through the NG tube. The doctor even said that if she does well and continues to grow that the following month we drop an other and then in 2 months the last one. Now that is so much to look forward to, imagine that not having a NG tube any more and not having to replace it each week anymore. so if Lorena keeps eating, drinking and growing well, she could be done with the NG tube by mid May. That would call for a celebration. Still I am cautious as it may take more time and I would hate to be disappointed again. I have learned to have lots of patience with Lorena and to continually move out goals.
 
Still over these past 3 months she has made great progress in eating and drinking and we are very encouraged. She does not eat big portions so we are still feeding her 6 times a day but right now our goal is to get her off that NG tube.
 
Lorena is also wanting to chew on chunky stuff like meat, vegetables, cereals etc. However for now she only chews on stuff and then spits it out. Her food is still the soft smooth stuff as she gags and throws up on anything to thick or lumpy. Still with her practicing chewing on all kinds of food, we can see her slowly getting used to other foods as well. She just needs more time then most kids to get there. Also Lorena has gotten into the habit to shake her head "yes" if she likes the food and "no" if she does not like it, still we try to feed her everything and not just what she likes only.
 
Lorena speaks Dutch all the time. Besides mamma & dadda which she does not use a lot the rest of her language is Dutch....well the rest of her language consists of just 1 word which she has figured out works for almost everything. The word she uses is "DIE" transalated in English it would mean "that". Lorena would point to what ever it is she wants and say "die". With the result that we give her what she points at or if we get it wrong she shakes her head and points again and says "die" until we give her what she wants. Off-course she does not always get what she wants and she knows the meaning of the word "no" very well. When we say no she shakes her head "no" and if she does not like it she will hang her lips as she is displeased. It is fun to see all the expressions she can put on her cute little face.
 
The highlight this past week was on Friday March 27th, just a few days ago when Lorena suddenly figured out how to walk. She was walking across the living room, off course the whole family came (dad was called from his work/office in the basement) to look and we were all excited to see such a wonderful thing as a baby taking the 1st steps alone. Lorena was all smiles from ear to ear and then she walked back and stopped half way, in the middle of the room and started to clap for herself. She sure got everyone laughing. What a joy to see her walking now.
 
I would like to ask you to continue to pray for the healing of Lorena's heart. This summer we will meet with the cardiologist again and we so hope and pray that the hole in her heart is healing and growing closed. We pray that no heart surgery will be needed.

One year ago the Canadian Baby Photographer came to our house to take pictures of Lorena. If you like to see these pictures, then you can now find them on our website at this link:

http://www.telusplanet.net/public/lorejj20/april4.htm
 
 
We thank the Lord for the continual gradual improvement in the eating difficulties Lorena has and we pray that soon she will not need an NG tube anymore. It is amazing how far Lorena has come. What a joy she brings to this little family.
 
Wishing you all a Happy Spring and a Blessed Easter !
Lodewyk, Rena, Janita, Jeremy & Lorena  
 
 
I will send out the next update at the beginning of July.
 
  Standing up by the furniture. February 9, 2009
 
  Jeremy with his fire station cake on his 10th Birthday.
 
 
Lorena having fun with daddy and showing off her teeth.
 
 
 
Our little sunshine, bathing in sunshine!
 
A sunbeam coming through the upstairs window for a few moments, as the sun was going down, fell on her face while she was playing in the living room. I quickly pulled out my camera to photograph Lorena with her little transparent ears.
 
  Lorena riding her car and playing with sister Janita.
 
  Look at me mom, I can ride it by myself !
 
  With this cute face, I should be advertising for the Calgary Flames!
 
 
Hey Jeremy, give me back my bear !
Lorena really likes the yellow bear and does not like it if we hold it, it's hers.
 
  Having fun as she walks along the furniture.
Lorena gives us a lot of these wonderful smiles throughout the day. She is a really happy girl.
 
 
Lorena checking out some family history!
 
This old bear (almost 40 years old) was Lodewyk's when he was a boy.
Lorena liked it but it is too big and heavy for her to move. I am not sure what they used to stuff bears with back then but it weighs a ton.
I am sure Lodewyk started muscle building from the day he got this bear.
 
 
The advantage (or not) of having a big sister is that they can play dress up with you (or on you).
 
  Lorena just starting to walk by herself and loving it. March 27, 2009
 
  Just a walking back and forth in the living room.
There is no stopping her now!
 
 
An other budding pianist in the family.
We pulled up her high chair as Lorena loves to play piano.