The Asher Chronicles Part 5 - Diary Entries

Diary Entry - 4th January 2007

Asher had his first appointment with his Physio today to see how well he is progressing. The prognoses wasnt that good but all we can do is keep helping him with his excercises. She observed him and played with Ash for an hour. She said that he had improved slightly but was still weak. She said that he seems to have muscle weakness as well as low tone and she has written a letter to his pediatrician saying that further investigation is needed. She suggested that they do a muscle biopsy to see if it shows up anything.
Anyway we see the pediatrician on the 6th of February so I'll be able to ask him some questions and maybe they can give us some answers after testing. Ash also starts hydrotherapy swimming at The Childrens Hospital on the 31st of January.
I asked the physio when she thought he would walk and if she thought he would ever walk and she couldnt answer that. I think she couldnt because she cant say unless they know for sure what is wrong with his muscles. She did say that whatever the outcome the treatment would remain the same. So for now all we can do is help strengthen his muscles.

I mentioned about him standing on his toes and also that his ankles roll in. She said at this stage she wasnt to concerned about standing on his toes as long as he was standing and cruising furniture. Shes not entirely sure why he stands on his toes. Its a bit strange because when he is on his toes he's standing up straight but when he is on flat feet his ankles roll inwards and his bum sticks out and he leans over. She said both the toes and the ankles can be converted later on with splints. The physio has also leant him a brace which goes over both his legs like a mermaid. It gives him resistance and also helps him balance etc..

There is so much stuff to remember it seems things just continue to become more complex. Im feeling a bit sad and upset about the whole situation but I have hope that things will turn out positive in the end. Its just hard not knowing and also having a baby due any week now. I dont want ash to miss out on the time he needs because of it. I wish I could help him more or he could tell me how he is feeling. Im also sick of people telling me he's gonna be okay when I know he's not okay.

Diary Entry - 6th February 2007

Ash saw the pediatrician again today, Dr M. He is such a good Dr, I am so glad that Ash has him for a pediatrician.
Anyway he said that because Ash was progressing, although slowly, it was a good thing and that more tests were not yet needed.  He said that the physio was good but he was better and that Ash was doing well.  He said that the other tests were invasive and in order to do that it requires a general anesthetic and so that wasnt a good option and one that wasnt needed as yet.
He said Ashers ankles roll because he is floppy and that this winter they would put him in ankle boots to bring his feet down.  Usually they dont put them in shoes until they have been walking for 3mths but in his case he could start wearing them sooner to support his ankles. He also said that Ash is intellegent and reaching his other milestones even if it was a bit slow.  He said that Hypotonia is fairly common and because Ash has benign hypotonia that its just the pick of the draw when in comes to having it.

Ashy

The Asher Chronicles Part 4 - Diary Entries

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!.

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.

The Asher Chronicles - Part.2 - April 2005

13th April 2005 - Diary Entry

Tomorrow im going to be induced at 8pm which will be good. I cant wait to get him out of me. I havent felt nervous yet but im starting to worry a bit now about the pain. I think im gonna need drugs for sure cause I dont think I can handle the pain.
The Dr today said that when I get in there they will probably put the gel in then encourage me to sleep unless labor starts straight away. Then if nothing has happened by Friday morning they will break my waters. Im going to try and stay up late tonight and sleep in tomorrow morning so I can stay awake for as long as possible tomorrow night in case something happens.
So finally by this Friday me and Greg will have our boy and then on Monday next week if everything is fine we should be able to bring him home.

26th April 2005 - Diary Entry- Asher is Born

Well finally me and Greg have our boy at home. The birth was painful but it wasnt as bad or long as I expected it would be.
On the 14th Greg, Helei, and myself arrived at the hospital all ready to be induced. I was taken up to the delivery suite and was put in a really nice room. It was huge, it had a bath and some chairs & table, fridge, its own bathroom and shower.
When I got in there they inserted the gel onto my cervix and then hooked me up to two monitors. One to monitor the babies heartbeat and the other to monitor contractions.
They said that usually for first time pregnancies the gel doesnt do much and I would probably have to have my waters broken at 6am the next morning. They told me I should probably try and sleep. Anyway the gel was already giving me pains and after a while I wasnt sure whether I was meant to be still feeling them or not so I got Helei to go and ask the midwife.
At that stage I think they were mild contractions but getting stronger. Greg and Helei decided that it was best if they went home and got some sleep and left me to get some to. After they left the pains got heaps worse and I couldnt sleep so in the end the midwife ended up giving me a shot of pethadine to take the pain away. After that I slept for an hour and half and then woke up in heaps of pain. That was at 4am in the morning. At 5.15am I was lying in bed when I had a sharp painful contraction and my water broke so I buzzed the midwife who came in quickly.
The water just kept coming out! I thought it would all just gush outh then stop but it actually keeps coming out for quite a while afterwards. By this stage I was in a lot of pain and I was praying Greg and Helei wouldnt be late cause they had said they would be back at 6am. The midwife asked if I wanted pain relief and I said i'd wait till Greg got there and id ask him.
Time flew and before I knew it Helei and Greg walked in, I've never been so happy to see them in all my life. I then decided I needed the epidural so the anethetist came in explained everything and then inserted the needles. Helei had to leave the room for that cause she hates needles, but Greg was there with me. At that stage they checked to see how many centimetres I was and I was 2cm dilated. Once the drugs took effect I was okay again and it was bearable. By 10am the midwife checked how dilated I was again and by that stage I was already 8cm!! So that meant I didnt need the drip and I could start pushing soon. Greg was heaps excited whehn she said that, he was bouncing around the room.
Pushing wasnt painful but it was very exhausting. The midwife brought in a mirror so I could see what was happening and I could see the head. The head was down really far so Greg and Helei got a glove and felt his little head. After what seemed like ages he still wasnt out and all of a sudden the room was filled with heaps of doctors. They brought the suction thing to suck him out of me cause apparently they can suffocate fairly quickly and needed to get him out as soon as possible.
Anyway they attached the suction and as I pushed they sucked and all of a sudden he slid out. Afterwards I found out they had to cut me cause his shoulder was stuck. I think we all started crying when he came out. After he was wrapped he was given to me to hold and I finally got to see my handsome little man. I love him heaps and stacks.

I spent three days in hospital but are really glad to be home with him as is Greg. Its been hard so far not getting enough sleep. I think the thing I miss most is spending time alone with Greg and just hanging out. I love our boy but I really need to just hang out with Greg by ourselves.
Our families have been really helpful though, especially Helei and Jed and mum. Hopefully this Thursday when mum is over me and Greg can go out and do something by ourselves.

Monday - May - Diary Entry

I had my first mothers day yesterday. Me and Greg and Asher spent it at mums house and I got breakfast in bed and a cool pen and some utensils. Ash has been a bit sniffly today and he has coughed a few times so I hope he hasnt got a cold.
Its Gregs first day back at work today and its a bit quite around here and I miss him, I hope he is okay. I was expecting Helei to come over today but I guess shes working or something cause she hasnt called or anything and its already about 12.30. The cleaner is coming tomorrow and then on Friday the people from Child and Youth Health are coming over to check how we are all going. Then on Saturday its Artlans birthday, then later this month Asher has to go back to the cardiologist for his check up. Ash will be 1 month old this Friday and you can already see a difference in his face and he's bigger, chubbier and longer.
Im really getting used to this now. I was really upset at first because I thought me and Greg would never get to spend time together like we used to, but so far we have had nights alone together and its been great. Im coping a lot better with the lack of sleep. Ash is really a very good boy. He nearly sleeps through the night. He only really wakes up once and then a little later in the morning. I love him heaps. I cant wait till he can start talking to me and Greg and walk around and stuff.

16th June 2005 - Diary Entry

Me and Greg have been together for 1 yr and 10mths today. Tonight Helei and Jed are looking after Asher so that we can have a night to ourselves. Ash has been so good lately. He has been sleeping from about 12.30 to 6.15 approx. Ever since Leanne looked after him he has been sleeping really well. Last night he slept more than he ever has before. He slept from 12.30 to 10am!!! I went in to check on him twice because I thought something was wrong. Anyway he fed had a bath and was back to sleep by 11. Hopefully he'll sleep well for Helei tonight.

The Asher Chronicles - Part.1 - August 2004

17th August 2004 - Diary Entry.

What a day. Im sitting at home by myself now and panicing like crazy. I missed my period and have been feeling nauseas, not a good sign obviously. On the way home I bought a pregnancy test and greg called me on the bus saying he wasnt getting home until about 10pm, thank goodness!! cause now I have time to think.

The test was positive ARGH!!!! I think im gonna die. Theres no way I can tell greg. I started to panic so I went to the phone box and called Helei and told her. She was excited!! Oh my gosh now shes meant to be calling me back from Jeds phone if she can. I hope she can cause im so worried. I dont need this now. What am I gonna do.

18th August 2004 - Diary Entry.

Okay weeeell I told Greg and he was really good about it. Thank goodness I have the most wonderful man in the world. I love Greg so much. I cant wait til he gets home so I can give him a big squishy hug.
I told mum today. I love my mummy she was so cool about it, she was actually really happy about it. She wrote me an email after I told her and she wrote that she was happy I shared with her and she would support me no matter what me and greg decide.

Gregs been feeling weird today, he said he's feeling excited but strange about it. Then he said we really need to talk and stuff. Im sort of excited to. I dont know if I could get rid of it. I mean im a christian and morally and ethically its not right to kill a baby no matter how small. I've always been against abortion. I guess everythings a bit different when your in this situation though. And its not all my decision anyway its Gregs to. I cant wait til he gets home. I've been feeling really sick especially in the morning and my tits hurt a little bit and I feel weird and maybe a little emotional. I just cried at the stupidest thing on telly. Neighbours of all things.

I still havent told Kelly and Sam. Im gonna tell Sam on Friday night when he comes over. Im a little nervous about telling Kelly actually so I dont know when im gonna tell her, maybe on Saturday.
Boy do I ever love Greg, he is the best thing that ever happened to me. Tonight we are going over to Helei and Jeds to talk and have dinner and stuff. I really hope I dont get fat. Thats my only fear.

16th December 2004 - Diary Entry

I feel sick coming up my throat how gross!!

Yesterday me and Greg went to our drs appointment. When we were in with the nurse lady waiting for the Dr she said that when they did my ultrasound they couldnt see everything so they were gonna have to do another one then to see the things they had missed. Anyway when she said that I started panicing inside thinking he's missing an arm or a leg or something and that I dont want a baby without all his bits and pieces. Anyway then I asked the lady if its normal for them not to be able to see everything and she said that it is and that they couldnt spot some blood valve things and his bladder. Anyway I was relieved to hear that.

When the Dr came in he looked really tired he apologised and said he had been working for two days and just had a shower. I cant believe these Drs are made to work like that. Two days without sleep! My eyes would be closing poor guy. Anyway he set up the ultrasound and pointed out everything and we got to see our boy again. He was opening and closing his mouth and moving about and waving him arms. It was very cute. He was sitting in a breech position when the Dr was doing the ultrasound and we got another photo and saw his little face.
The Dr said Oh its pretty obvious its a boy and pointed out his little willy, then he said he had an erection!! How Gross!!! Yuk! Anyway later Greg said 'what do you think hes thinking about?' I just said 'gross I dont know!' and Greg said 'Maybe he's trying to make love to your kidneys!' 'Gross, I am soooo grossed out.

The 'Asher Chronicles'

Okay so as some of you know I have a son called Asher. He is four years old and has Hypotonic Cerebral Palsy and frontal lobe damage. That by no means defines who he is.
He is a couragious and strong willed little guy. He's had to be tough. But he's my baby, my asher bear - who gives big cuddles when he chooses to those he chooses. He's tough at the best of times, life is tough at the best of times, but I wouldnt change him for the world. I would fix him if I could, but his personality - who he is on the inside is perfect just the way it is.
He has a strength beyond his years like many children who face challenges and circumstances beyond their control or even understanding for that matter.
He doesnt understand why he cant run or why he falls over all the time and other kids dont. He doesnt question why he is different and if someone says he cant do something he is determined to prove them wrong in his own time. He can do anything - that is what we are teaching him. He should not be bound by what he 'cant' do - he should discover all the wonderful things he can do and when he does he does it with this steely concentration, and he will do it until its done perfectly to his standards.
He is an inspiration and for some reason god trusted me to keep him and learn from him. I am still learning, I dont know exactely what that is but from the moment I was thrown in the deep end I have been swimming and from womb to world this is the story of Asher.