Another issue

Special services came last week. They overloaded us with information regarding different programs and groups that could benefit Ethan. They are going to perform a developmental assessment and referrals to speech pathology and a physio have been done. After all this, we need to research all options and work out what is best!

The 'make a wish' foundation also gave us a visit last week. They delivered a box full of toys for Ethan and some things for the girls too. It was a pretty exciting. We all had a good morning.



We have also seen the paediatrician. Ethan's alk phosh is still elevated but all of the other blood tests are normal. A huge relief. The paediatrician diagnosed hyperalkalinephosphatasia or something like that. In our words..an elevation of his alk phosh, in conjuction with a virus. It usually occurs before the age of 2 and can take up to 6 months to recover. Ethan will need regular blood tests to monitor it but hopefully it comes down by itself soon.

His asthma is still all over the shop. He has been commenced on a 9 day course of prednisolone and is requiring his ventolin regularly. Hopefully the prednisolone kicks in and he can get over the viral chest bug which is still hanging around.

The Easter Bunny found the kids in Castlemaine this year.

more time in hospital - chest infection

Last Thursday morning Ethan did his blue trick. He had had a cold for a week and had started coughing. His ventolin wasn't getting any results, doctor mum diagnosed viral pneumonia so another visit to Monash.

He was admitted at Monash with an exacerbation of asthma due to a viral respiratory infection. They also found he had an urine infection. They commenced IV antibiotics (After numerous attempts to put in an IV) They also sent off the usual blood tests. He had a chest Xray. This indicated his heart wasn't abnormally big, and that he had a chest infection. It also showed his bones were good, but he would still need to have the follow up blood tests.

The blood test came back and his alkaline phosphatase was quite high. My understanding is that it is usually below 500 and his was 1600. He was ordered more tests to try and work out why. The liver and bone can both cause this level to rise and due to his cardiac condition and his oncology both are a possibility. They also repeated the level to see if it was coming down but it had gone up to 2400.

The cardiologist reviewed him. They thought it was unlikely liver due to cardiac complications because there were no other indications, so it must be bone. Another doctor came and ordered more blood tests. To check his calcium and vit D levels and also to do all of the follow up bone and parathyroid blood tests that he was going to have because of the Xray back in Feb. He also spoke to the oncologist about the possibility it could be cancer. The oncologist came, they thought it was unlikely cancer because his kidney ultrasounds and chest xray have been good.

Ethan picked up after a lot of ventolin and some prednisolone and late Saturday we were discharged. I had to make a paediatrician appointment to follow up the blood work. I couldn't get in to see Chris Smith so we went to the GP. His alkaline phosh had gone up again to just over 2500 and the other results weren't back yet so we still have no idea what is causing it. We are hoping it will just come down by itself and that it is nothing but at the same time there is the chance it could be cancer in the bone.

Special services are coming this morning. I will let you all know what is happening with that and post some more photos later.

review and holiday

A lot has happened since the last entry.

On the 22nd of February Ethan had a follow up xray, abdominal ultrasound and blood test. He was given the all clear. His blood test revealed his Hb was in normal range but too low for his cardiac condition. He subsequently has commenced a 6 week iron supplement program to boost this to about 170-180. We went home feeling pretty positive about things only to hear that his chest xray revealed his bones looked too thin. This meant back to Monash for wrist, tibia and ankle xrays. These xrays were all clear, but another blood test is required at his next 6 week review. This visit coincided with an audiologist consultation. Hearing was checked and found to be normal - green light for speech therapy.



Ethan with the boss man - Dr Peter Downie

Ethan is currently enjoying a family holiday in Pambula Beach and Canberra. He seems to have progressed in the last week and a half. He is eating and drinking well. There is no chest wheezing. His toilet training is also good.



Catching up with Nanna Hanna before the holiday



Soaking up the rays



Playing with the roo's



One of many trips down the toboggan