Diary Entry - 6th November 06
Ash is well and has been really happy for the past week or so. He has an appointment with a pediatrician this week Thursday to see why he hasnt started walking yet - he is also due for his 18mth old vaccinations.
Diary Entry - 10th November 06
I have been having a pretty rough week and havent been feeling the best. On Thursday Asher has his appointment with the pediatrician to determine why he isnt walking yet or isnt even interested in it.
He has been disgnosed with Congenital Hypotonia Syndrome which is also known as low muscle tone or Floppy Baby Syndrome. Although its not all bad news and we have an answer finally but I am still very worried and disappointed and angry.
The pediatrician said that its just going to take him a while longer to walk, the goal at this stage is to have him walking by 22mths.
We have to put all his toys up where he'll have to reach for them, he can only ride his bike for 20mins a day max and he has to crawl everywhere.
We have to help him with his language by using picture cards and he might need physio at The Childrens Hospital.
I feel like a failure in some ways. I feel sad and angry that this has happened to him and us and im hoping that there are no further complications. If he's not walking by 22mths then they will have to do more tests on him. I am also angry that not one Dr picked this up sooner, especially since we have been to so many of them. I am also angry because I feel like I cant talk to anyone about this.
Diary Entry - 15th November 06
As part of Ashers development stuff its recommended that he does an hours swimming a day so I took him to the aquatic centre. I just have to get him used to the water first because he is scared of it, he clings to me like a monkey. Anyway he cried for the first 30 minutes and then after that he was happy in my arms and we walked around the pool just getting used to it.
Diary Entry - 18th December 06
I cant wait until Wednesday so that I can finish off my christmas shopping. Asher and I might go to Toy R Us and see if they have something. I really worry about his development and if what im doing is helping him. He is my number one priority at the moment, I just cannot fail at this. I am taking him swimming again tomorrow. He is really enjoying the water lately, he loves it!. He's really moving around a lot in the bath too and I have noticed his confidence grow and grow. To think that the first time I took him swimming he screamed and screamed and now he splashes and kicks about and even trys to drink the water!. He is doing so many things now. He can even feed himself with a fork really well. A spoon is still a bit messy but we'll tackle that one next!.
Saturday, February 20, 2010
Monday, February 1, 2010
The Asher Chronicles - Part.3 - The Missing Pieces
To be honest I dont know why I cant find any diary entries of what happened in between the events that had already taken place. Maybe its because it was to hard to write, or maybe its because it was to hard to read.
Whatever the reason I guess it doesnt matter because it will always be clear as day in my mind. There are things I questioned but being a first time mother believed that a Dr knew best, despite that feeling deep down that something wasnt right and questioning mothers around me.
So I'll try my best to fill in the blanks up to the point we have currently arrived at.
On April 15th 2005 Asher was born at 2.30 in the afternoon. My labor was about 8hrs long with few complications. My waters were stained, which is something they left out of my hospital notes. Actually they didnt even leave it out they put no when it was a clear yes in his blue book where it specifically asks that question. Anyway this showed early on that he was in some distress. He had mild shoulder dystosia - yes babies can die from this in severe cases. So they had to use the suction to get him out quickly, which was used with such force that it took a patch of skin off the back of his head.
When he finally made it into this world I was so happy. Being a parent, first time or not, its easy to worry about your new bundle of joy. Its the times you stand over their crib after they are asleep listening for their next breathe and then the next..and not convinced still you put your hand gently to their chest to feel it rise and fall. I guess what im trying to say is that as a parent its easy to over-react sometimes and worry about minor ailments. That being said I guess thats why Drs seem to also find it easy to fob us off, reassure us its nothing and tell us to go home.
After my labor, baby in arms, I had to wait for the epidural to wear off, my legs were completely numb. So before I could be moved onto the ward I need my legs to wake up enough to stand. They were also waiting for a bed to free up. It was in this time that Kelly and Sam popped in to spy my llittle bub. Laying in the hospital crib wrapped in a tight little bundle I noticed his breathing was very loud and he was gurgling. I asked the nurse and she said sometimes babies have mucas still in them and find it hard to bring up. Anyway satisfied to an extent I took her answer as reassurance even though I had never heard a baby gurgle before. This did not stop either. Later back up in the ward for new mothers and babies Greg and I were marvelling at our boy when he turned blue, he had mucas coming from his mouth and his nose and couldnt clear an airway. I told Greg to run and get a nurse so he ran Asher to the nurses station and they took him down to the special care unit where he continued to have more episodes. If I was a little older and a little wiser I might have asked more questions, I might have demanded an explaination but I didnt and that is something that I regret. I dont know why it was never investigated further by the nurses or Dr, especially when he had repeated episodes.
On our day of discharge a pediatrician comes around to give the all clear to send you home so they came around and checked him out and he had a clicking hip. They said to have our GP check it again at our 6 week check up and we were sent home.
The first night at home was horrible. He was awake all night and I remember sitting in the lounge room crying in the rocking chair with him in my arms. I was so tired and I didnt know what to do.
The next evening he started turning blue again with the mucas and he was taking a really long time to feed and he would wake up completely wet through his clothes everywhere with sweat. So Greg and I worried took him to the emergency room.
We were in there the Drs asked a million questions and came back and forth and then asked more questions. It almost seemed like they didnt believe us and we felt stupid for having brought him in. So we ended up saying this is stupid we are just going to take him home. It was only then that they said no you were right for bringing him in and told us they were sending the cardiologist down to further investigate.
They did and they gave him an ecg or something like that. They put those little heart things all over him and also sent us up the the cardiology ward for further testing.
This happened regularly up until 6mths of ages as it was discovered that he had a hole in his heart. This was the reason he took so long to feed and woke up drenched in sweat. Thankfully at 6mths of age it had closed over and he needed no more monitoring.
At Ashers 6 weeks check up the Dr said that Asher hip was fine and she couldnt feel it clicking anymore. I mentioned to her that his shoulders felt like they were slipping out of the sockets and she said they were probably loose ligaments and they would get stronger as he got older.
To this day they never have because that was not the problem.
Asher only smiled at 7weeks old. He had no expression on his face at all until then. He never laughed until the end of June, and even then it was forced with little expression.
Asher still couldnt hold his head up at four months old. Still today when lifting him from lying on his back his head needs to be supported as it lags backwards.
Asher only squeeled for the first time at the start of August. It was then that he started testing his voice out and sucking both thumbs at once.
Asher had problems feeding at 2 and a half months - he was having problems suckling so he was changed to bottles which was less effort for him.
He has always projectile vomited - a lot - what would seem like everything you had just fed him.
Whatever the reason I guess it doesnt matter because it will always be clear as day in my mind. There are things I questioned but being a first time mother believed that a Dr knew best, despite that feeling deep down that something wasnt right and questioning mothers around me.
So I'll try my best to fill in the blanks up to the point we have currently arrived at.
On April 15th 2005 Asher was born at 2.30 in the afternoon. My labor was about 8hrs long with few complications. My waters were stained, which is something they left out of my hospital notes. Actually they didnt even leave it out they put no when it was a clear yes in his blue book where it specifically asks that question. Anyway this showed early on that he was in some distress. He had mild shoulder dystosia - yes babies can die from this in severe cases. So they had to use the suction to get him out quickly, which was used with such force that it took a patch of skin off the back of his head.
When he finally made it into this world I was so happy. Being a parent, first time or not, its easy to worry about your new bundle of joy. Its the times you stand over their crib after they are asleep listening for their next breathe and then the next..and not convinced still you put your hand gently to their chest to feel it rise and fall. I guess what im trying to say is that as a parent its easy to over-react sometimes and worry about minor ailments. That being said I guess thats why Drs seem to also find it easy to fob us off, reassure us its nothing and tell us to go home.
After my labor, baby in arms, I had to wait for the epidural to wear off, my legs were completely numb. So before I could be moved onto the ward I need my legs to wake up enough to stand. They were also waiting for a bed to free up. It was in this time that Kelly and Sam popped in to spy my llittle bub. Laying in the hospital crib wrapped in a tight little bundle I noticed his breathing was very loud and he was gurgling. I asked the nurse and she said sometimes babies have mucas still in them and find it hard to bring up. Anyway satisfied to an extent I took her answer as reassurance even though I had never heard a baby gurgle before. This did not stop either. Later back up in the ward for new mothers and babies Greg and I were marvelling at our boy when he turned blue, he had mucas coming from his mouth and his nose and couldnt clear an airway. I told Greg to run and get a nurse so he ran Asher to the nurses station and they took him down to the special care unit where he continued to have more episodes. If I was a little older and a little wiser I might have asked more questions, I might have demanded an explaination but I didnt and that is something that I regret. I dont know why it was never investigated further by the nurses or Dr, especially when he had repeated episodes.
On our day of discharge a pediatrician comes around to give the all clear to send you home so they came around and checked him out and he had a clicking hip. They said to have our GP check it again at our 6 week check up and we were sent home.
The first night at home was horrible. He was awake all night and I remember sitting in the lounge room crying in the rocking chair with him in my arms. I was so tired and I didnt know what to do.
The next evening he started turning blue again with the mucas and he was taking a really long time to feed and he would wake up completely wet through his clothes everywhere with sweat. So Greg and I worried took him to the emergency room.
We were in there the Drs asked a million questions and came back and forth and then asked more questions. It almost seemed like they didnt believe us and we felt stupid for having brought him in. So we ended up saying this is stupid we are just going to take him home. It was only then that they said no you were right for bringing him in and told us they were sending the cardiologist down to further investigate.
They did and they gave him an ecg or something like that. They put those little heart things all over him and also sent us up the the cardiology ward for further testing.
This happened regularly up until 6mths of ages as it was discovered that he had a hole in his heart. This was the reason he took so long to feed and woke up drenched in sweat. Thankfully at 6mths of age it had closed over and he needed no more monitoring.
At Ashers 6 weeks check up the Dr said that Asher hip was fine and she couldnt feel it clicking anymore. I mentioned to her that his shoulders felt like they were slipping out of the sockets and she said they were probably loose ligaments and they would get stronger as he got older.
To this day they never have because that was not the problem.
Asher only smiled at 7weeks old. He had no expression on his face at all until then. He never laughed until the end of June, and even then it was forced with little expression.
Asher still couldnt hold his head up at four months old. Still today when lifting him from lying on his back his head needs to be supported as it lags backwards.
Asher only squeeled for the first time at the start of August. It was then that he started testing his voice out and sucking both thumbs at once.
Asher had problems feeding at 2 and a half months - he was having problems suckling so he was changed to bottles which was less effort for him.
He has always projectile vomited - a lot - what would seem like everything you had just fed him.
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